Bioethics for the People

In this episode, Stefano Mugnaini shares a success story about how he was able to work with wardens on behalf of incarcerated patients.

Transcript

0:00 

Before we start this episode, just want to remind you to protect patient privacy, the details and names in the cases we will be discussing have been changed.Now on to the episode.Welcome to this episode of Bioethics for the People, the most popular podcast on the planet according to Grandma Nancy. 

0:20 

I'm joined by my Co host Doctor Tyler Gibb, who if he weren't here recording right now, would probably be golfing.And I'm joined by my Co host Doctor Devin Stahl, who dutifully completes the same 5 New York Times puzzles every day.Good morning, Tyler. 

0:41 

Good morning.All right, so we're kicking off a special series of cases of interviews with clinical ethicists who had some success at their institution, pushing through a policy or a procedure or really crushed a case.Sometimes we just need hopeful, uplifting stories. 

0:59 

Yeah, the last couple seasons have been a little dark.We're going to be honest.A lot of our work can be tough like that.I'm really excited to highlight some some victories, some successes.All right, so who do we have for today?All right, we've got Stefano from Alabama. 

1:16 

I I avoided saying your last step because I'm still, I can't, can't say it in my head yet, Munyanini.Munyanini.Munyanini.OK, Stefano, no, I'm not going to try again.I'm going to let, I'm going to let him introduce himself.All right, Stefano, you introduce yourself.OK. 

1:32 

So I'm Stefano Munyeni.I'm originally from Florida, but I live in Alabama and I'm one of the two primary clinical ethicists at the University of Alabama, Birmingham.My colleague Sybil is next door.And the two of us are pretty much, we work pretty closely with the Ethics Committee and everybody else, but we're, we're the two folks that spend most of our time dealing with specific ethics issues and consults. 

1:55 

In my experience, it's actually pretty awesome that you have two full time people.So how big is your hospital?I don't know what the most recent numbers are, but we're somewhere in the neighborhood of 1200 beds.Whoa, so you're big?Yeah.And we have a separate hospital that's AI don't know 2 miles down the road. 

2:13 

It's a was originally a rehab orthopaedics and rehab facility that's been converted to a acute care hospital.And and then we have a big clinic complex that we mostly we step in to help guide decisions about tooth extractions and things like that over there, but but other procedures as well. 

2:35 

So.Dental clinical ethics, that's an underexplored area for us, I think.Well, so my neighbor's working on a doctorate and she, that is an area that sort of out of the blue she has become deeply interested in.So we're really not sure why, but she's not even sure why. 

2:52 

But it is something we get a lot of calls because of the, the way this sort of surrogate hierarchy works in Alabama.If someone is truly unrepresented, we can step in and, and consent and make most of their decisions.And there are a lot of folks who come to us from group homes and things like that who need dental work done and don't have anybody who's able to consent. 

3:15 

So that is a a strangely growing part of our area of responsibility.So.Cool.But today you will have another kind of patient that you want to talk about.So did this start with a case with a particular sort of incident at the hospital that kind of kicked off what you now see as a success story at your hospital? 

3:37 

Yeah, it it actually, for me, it started as a paper that I wrote for school and it concerned a case that happened at UAB before I was here.And in in defense of my mentor and predecessor, Wendy, Wendy Walters, who is a wonderful person who really brought me on board. 

3:57 

She wasn't really involved in this case either.This was one of those things where everything sort of went down without ethics involvement, and years later, sort of it became clear what had transpired was not what should have transpired.So I wrote a paper about this case and then found myself reviewing policies related to it and realized that our policy didn't really accord with state law as interpreted by the judges involved. 

4:29 

That seems like a pretty big oversight.Yeah, I mean, that's so often the case, right, That we we run into a case and we had one a couple of years ago where it was novel case that we'd never seen before and went to the literature.And like the the society statement said, before this happens at your hospital, we recommend that you develop a policy to address this. 

4:50 

They're like, OK, great, that's not helpful.So, so you had a, so there's a case, historic case, probably one that sticks in the memory of some of the clinicians who were involved in ethics, particularly around incarcerated patients is what you, you had mentioned.And so you did an analysis for school and then came back and and we're able to work on actually changing the policy in order to to help it help that situation. 

5:15 

Yeah, the first, the first policy here that has my name on it is, you know, related to this case.So that's for me a little bit of a point of pride.I felt like I kind of hit the ground and got something done, so yeah.That's great.Aspirational student work, Yeah.Yeah. 

5:31 

So walk us through it.What?So tell us about the case and and kind of how you got involved with it.OK, so in 2014, there was a patient who was brought to us from Saint Clair County Corrections Facility, which is in Springville, AL, which is probably an hour, not quite an hour outside of Birmingham. 

5:56 

And this was a guy who was doing life in prison for a 2007 murder.And somebody in the prison, he and this other individual had had kind of a series of conflicts that eventually ended in Marquette Cummings, who was the the individual in question being stabbed in the eye with a Shank and which, you know, pretty rough situation. 

6:26 

Obviously it, it sounded like in hindsight, there might have been opportunities to keep these guys separated and it didn't really happen.So he was stabbed in a prison fight or in a fight in prison and was brought to us and very quickly transferred to the neuro ICU. 

6:45 

He came with a piece of paper that included instructions from the warden that no heroic measures would be taken to save his life, which is a quote.I'm not sure how they defined heroic measures, but, but this was essentially sent with the paperwork from the from the warden and he was made DNR by one of the physicians that evening. 

7:10 

Somewhere along the way, the patient's the the patient's mother showed up.And here's where the story gets pretty murky.The reporting that I was able to uncover, she either was allowed to visit but not be involved in goals of care conversations, or she possibly wasn't even allowed to visit the bedside. 

7:31 

The reporting on that varies, but in in either case, decisions were made.The expectation and the understanding of the team was that Mister Cummings was probably had already probably progressed to brain death, but before any of the the neurological testing had begun, on the warden's instructions, they withdrew support and allowed him to expire. 

7:58 

This, not unexpectedly, perhaps led to a lawsuit.So this paperwork I've did you ever see that piece of paper?Was it in any of the reporting?What did that even look like?That unfortunately I have no idea because this happened in 2014 and I came on board in 2022. 

8:18 

So my understanding was it was literally just that, you know, we get a, we get a, a packet from the prison Infirmary and the prison medical staff.And my understanding it was just basically a sheet of paper, like like a face sheet or something that had someone had printed on their take no heroic measures. 

8:40 

And then they were in contact with the warden via phone and it was a phone conversation where they said go ahead and withdraw.OK, so they were consulting it.They didn't just go off this one piece of paper.No, no, OK.There's immediately two big ethics questions that come up.The most glaring is, does the warden have authority to make decisions on behalf of the incarcerated patient? 

9:01 

And the second is how they allow or how should we allow or inform families about the incarcerated patient being in our hospital.And I, I think I know the answers to those questions that apply for most states.But I mostly get the second question because I think the first has well been settled in our policy. 

9:22 

But I want to get to how Stefano was able to change his policy to get to it.But there is some gatekeeping that can happen and then there's some gatekeeping that cannot happen.But I typically get the kind of are are we allowed to call the family and tell them, which is a second kind of question.Yeah. 

9:38 

And part of where this gets complicated in Alabama is there is really broad statutory authority given to wardens to gatekeep communication and visitation.I mean, basically universally they're allowed to say who's allowed to visit, who's not allowed to visit, who we can call, who we can't call. 

9:56 

Practically, there's a certain amount of, hey, we called the warden to ask if we could call the family, and they haven't gotten back to us.So what can we do?And my tendency is to say, well, until, until they say no, unless there's a really obvious reason why we should be concerned, my inclination is to go ahead and make that contact. 

10:23 

But most of the time we do try to at least talk to the warden first.One of the things that came out of not our policy change, but this case in particular has been it's made prison wardens much less inclined to want to get into the weeds of these cases. 

10:43 

And also has, I've found that they have sometimes even in conversations I can just mention, are you familiar with Cummings or Davenport?And they'll say, yeah, So what do you need from us?Oh.That's good.And they're much more willing to work because they recognize that their authority does have a a terminus at some point. 

11:05 

So tell us about that case.What is?Is that the case that came out of like that legal case?Yeah.So, and I think that that I'll actually say, I think part of the reason that our policy, our, so our policy stated in our informed consent policy for convicted inmates, the warden of the prison is their surrogate decision maker. 

11:26 

I'm not completely sure how that was part of our policy, but I think it has to do with there were a couple of other cases that sort of unrelated that sort of affirmed that to some extent a warden has some medical decision might they actually said might possibly have some sort of medical decision making authority. 

11:48 

I think most of the time that's when they're inside the, you know, the prison complex.But, but so because our policy stated that everyone just kind of followed the policy and let the warden call the shots.What I've what I've found now having this in the in the background, they, they are, they are quick to say, we recognize that we're not really in charge here. 

12:11 

But with this particular case, what ultimately happened was the estate of the family sued and said that they cited a couple of different things.They, they sued on the basis of the prisoner not having been separated from this antagonist, because I think there were two or three separate cases where Mr. Cummings was either in an altercation or was attacked or was harassed by this other individual. 

12:40 

So they sued on that basis.They said it was essentially cruel and unusual punishment, that there was no isolation and separation.I think that was kind of thrown out.They also sued on the basis of the warden claiming authority for, you know, making end of life medical decisions for the patient without having any express right to claim that authority. 

13:04 

And so then it all hinged on a question of which this is a timely question, I guess, whether a person acting in that capacity can actually just use their position to claim immunity, qualified immunity in the course of their official duties. 

13:23 

And that was where the whole case kind of hinged.Yeah.So he was saying, not only did I have the right to do this, I'm protected by the law for having made that decision.You can't come back and sue me.The law protects me in these scenarios.To which the judge said what?It's one of my favorite quotes that came out of actually. 

13:42 

So there were two decisions in this case because it was heard by the local court and it was heard by the 11th Circuit Court.And there are great quotes in both of the decisions.Not that legal briefs briefs are usually really great reading, but these were.Tyler loves them.Tyler, I know I some of them are really a rollic in good time. 

14:02 

So so judge by the name of William Pryor, who was the 11th Circuit Court judge.He's actually cited Ashcroft versus Al Kid, which was a Guantanamo Bay case that came out of, you know, in the early days of the ostensible War on Terror. 

14:19 

They were just rounding random people up and throwing them into Gitmo and then figuring out the charges later.So in this case, Pryor says based on his reading of that breathing room afforded by qualified immunity is generous. 

14:35 

Although qualified immunity provides government officials with a formidable shield, their entitlement to raise that shield is not automatic.So.All right, so trans translate that for us.Yeah.Well, so basically he said, yeah, you can do almost anything behind the guise of qualified immunity, but you yourself can't determine when qualified immunity is a relevant defense. 

15:00 

And in this case, the the broader issue was, and I think this had been mentioned by Judge OTT in the lower court ruling, he said, he said the the problem here is when there is a statute that lays out a surrogate hierarchy or anything else. 

15:22 

And I, I always screw up the Latin here, but there's this legal principle of expressio unius alterius, exclusio or something like that, Exclusio alterius, which means if one thing is included, all other things are excluded. 

15:38 

I took Latin for four years in high school and I can barely remember 2 phrases.I know I'm killing it.My, my professor, my teacher somewhere is so proud.But basically it's this idea that if, if you include something in a statute, then anything that is excluded, anything that's not included in that statute is necessarily excluded. 

16:02 

So in this particular case, the state provides a surrogate hierarchy for end of life decision making and it it names a bunch of different people as potential surrogate decision makers specifically at end of life.And anybody not named in that statute then is implicitly excluded from the statute, right and. 

16:23 

Let me guess, the Warden is not on that list.Turns out they are not.As I mentioned, they do have.There is a another state law that lists very broadly all of the stuff a warden is in charge of.And it does include things like visitation and communication. 

16:41 

But it does not provide any room whatsoever for a warden calling a hospital and saying, in the popular parlance, hey, go ahead and pull the plug.There's just nothing there for that.Yeah.So, so is that a new state law or do you think your policy? 

16:57 

So I guess my question about your policy is it sounds like your policy was not in accordance with the state law, right?That your policy was allowing the warden to make decisions even though state law didn't allow the warden to make decisions.Is that right?Yes, but I think it's more that the law had never been really explored in this particular context. 

17:21 

And so there was an interpretive process and and I mentioned there, there are a couple of other, the most notable one, another case was about a guy who was the acting something or other supervisor at Tutwiler, which is a women's maximum security prison. 

17:41 

And he's, he was in this acting role for like 18 months and he wanted to get the job permanently.And they, they didn't offer it to him.And they cited the fact that he was a male and they felt like he couldn't do the, the duties of this, this job as a male. 

17:57 

And one of the things that it hinted at was a warden had some responsibility for the medical needs of inmates.And if it's a warden, he couldn't understand the needs of a female inmate.And that was one of the reasons why he was not chosen for the law. 

18:16 

And so there's there's this sort of legal nod to the idea that perhaps wardens do have some involvement, appropriate involvement in medical decisions.And I think that was probably what was used to sort of justify this idea.But no one had ever really tested it related to an end of life situation. 

18:34 

And that's what happened in this case.Stefano that is such a leap though.I mean for this like kind of obscure case, a male female discordance to presume then that the warden can make any and all end of life decision.Seems to me like a hospital lawyer was either like totally in the dark about this policy being written or made quite the like inference from that case, which seems like, come on, I can't be like a popular case in Alabama that everybody knows about. 

19:02 

So like, dredge it up is like, well, I guess I'm going to make a leap here and say wardens get to make decisions for patients while they're in our hospital, which again, is like a different context because making medical decisions in the Infirmary and making medical decisions in the hospital is also not the same thing. 

19:19 

Yeah, Yeah.That case is Edwards versus Alabama Department of Corrections from 2000, by the way.And I'm just speculating.I really don't know if that's how it was interpreted, but my guess is that's one of the only cases that was ever involving this idea of wardens and decision making. 

19:37 

And I suspect that is the the leap that was made.But I agree, I don't think that it was necessarily an appropriate one, but I think you could probably interpret that as to say, well, as long as the decisions in question are not technically end of life, there's at least the defensible aspect to that policy, even if it's not maybe the best idea. 

20:00 

Seems like a bad idea.OK, Yeah.I agree.I totally agree.Let's give them the benefit of the doubt and say they were trying.There wasn't a lot of directions, so they did the best that they could.But then this case happens and it's very clear that the warden is not supposed to make end of life decisions. 

20:16 

And then you're this great student who recognizes this.You get hired at the hospital.You look over the policy and go, uh oh, there's a big problem here.So how did you move from like I see a problem newly hired clinical ethicist who wrote a student paper once to actually changing your hospital policy? 

20:34 

Yeah, and this is where my zeal outstripped my wisdom or my my, my phronesis, as Pellegrino would say, I guess.Yeah.Out kicked your coverage is how we yeah.I just, I just basically started pounding my desk and screaming in ethics meetings, in Ethics Committee meetings. 

20:54 

I mean, I probably wasn't quite as dramatic as I think I was, but I just said I, you know, we run into these cases constantly and I don't think this is a workable system.We're clearly contrary to the law.So then I also just started, I probably shouldn't say this for something that's going to be out in the world. 

21:13 

I just started coming up with my own practice trying to figure out how I could navigate these situations.And it, it so happened that the summer when we were working on the policy revision, we had a couple of situations where there were pretty significant aspects to the situation that made it where like the warden's ability to limit visitation was probably a good idea because of some safety concerns, because of the, the violent nature of some of the, the crimes for which these people were incarcerated and concerned that there may be people out there with a, a real desire to get back at them. 

21:53 

And that actually gave me a really good opportunity to have some long conversations with the warden at, at one of the prisons and kind of work out a process that, although clunky, was at least workable, which is essentially, we contact the warden anytime we get a patient in this kind of situation, you know, possible end of life imprisoned. 

22:15 

We have them automatically get ethics involved.We make contact with the warden and we basically say, you know, we've got to talk to family to get the right person acting as surrogate.How do you propose we do that?Do you want to be the first contact or do you want us to be the first contact? 

22:32 

And most of the time we've gotten very little pushback.And they've said, yeah, let us make contact with them first and then we'll get back in touch with you.And, and so once they've made first contact and we've had some conversations with them about things like visitation, generally speaking, they will allow some limited visitation and most restrictions on communication are, are off the table. 

22:55 

So somewhere in that process, I was able to come back to the Ethics Committee and say, listen, I've just sort of come up with a, a sort of workable way of, of, of doing this.And I really think we should enshrine that into policy. 

23:11 

And then they called my bluff and said, great, write the policy and send it to us of.Course they did, of course.Who else wants to write that policy?That's great.So it started with the relationship.I mean, that makes a lot of sense to me is you started talking with the warden because it's easy to kind of pigeon hole somebody as being like a bad actor or like unreasonable if you've never actually tried to have the conversation. 

23:32 

So you establish this relationship, you sort of set the terms.This is genius by saying, but by giving over some authority, saying you know the context, would you like to be the first to reach out or not?So that and you didn't frame it as a question.You said so that we can find the appropriate decision maker. 

23:51 

And so by setting the terms that way, there was no ambiguity about who was supposed to be making these decisions.Yeah, that's great.Yeah.And you also, you also set it up.So like the thing that we cared about most, the ethics consultation service or you cared about most is making sure that, that that question was answered right. 

24:11 

And it didn't become like a, a power struggle about like who's in charge of this patient?And, and you know, are you transferring authority and, and all these other things?I find that that's often the the most important thing that ethics consultants can do is help distill the question into, OK, in this situation, regardless of all the other weird contacts that is going on that we can or can't control, we want to make sure the right person is making the right decision for this person as they die. 

24:38 

Right.And I think a lot of a lot of people are gonna agree with that as the, the, the problem that we're trying to solve.And here's an example of, you know, a way in which I figured out how to do it.And I think that's really great.Yeah.Tell me about cold calling the, the warden.How'd you get in contact with them 'cause I've cold called a lot of people. 

24:56 

I cold called presidents at hospitals.I've cold called probate court judges, legislators.I've never cold called a warden.You know, Once Upon a time I worked in sales and I hated cold calling and I wasn't very good at it.But I will say prison wardens are easier to get a hold of than just about anybody else. 

25:15 

It's remarkable, at least in Alabama.And and I think some of that is there is a certain weight when I get a hold of the person that answers the phone for them and say, hey, I'm one of the ethics consultants at UAB Hospital.We've got a patient here, need to talk to the warden. 

25:31 

There's not usually a lot of gatekeeping.They're pretty quick to put me through because they recognize that, you know, there's some pretty critical things happening.The other thing I mentioned earlier, a lot of times, I'll invoke this case and most of the, there's a, there's a fascinating website called Prison Legal News that again, surprisingly interesting. 

25:54 

But most of the wardens that I've encountered have have become aware of this case such that they're very quick to say, yeah, we understand that this is not something we can make decisions about, but we need to, you know, figure out what we're going to do.So I've actually found that they've been much less, I mean, much more accommodating and much less resistant than I probably would have expected. 

26:15 

I've had a different experience with jails than with prisons, but that is probably a sub.I don't know if that's the subject for now or for another day.What do y'all think?Well, maybe try it out and see.We'll see if it makes it fun, OK?OK, no, tell us. 

26:31 

So the biggest, the biggest issue with jails is because it's much more of a transient situation, most of their medical staff are outsourced from out of state.So my impression and encounters with them has been that they care very little about what the laws in Alabama actually are. 

26:51 

And their biggest concern is, I mean, they're, they're not, they don't feel responsible for the patient in the same way that prison medical staff and other staff, all other things being equal, I think they do have a sense of responsibility for the people under their charge. 

27:08 

And I don't see that same level of a kind of a sense of responsibility from the jail.So we've gotten a lot more pushback from jails saying, no, we we're making all these decisions, we're telling you what to do.And also jails are really quick at end of life to just release somebody. 

27:24 

And I mean, they they sort of couch it in compassion terms, but I think it's more about not getting saddled with a lot of medical bills.But I don't know if that is maybe too judge mental on my part or not.That's interesting.So I heard a guard once say who was standing like positioned outside of a hospital room, say something to the effect of you can't let him die. 

27:47 

He has to serve out his term.My goodness.As as if like it like justice demanded to keep this patient alive or to prolong his death because he hadn't quite fulfilled his sentence.Which was just like a mind boggling thing to say, but wouldn't happen with a jailer who is less concerned with that because they presumably aren't in for long sentences. 

28:10 

Yeah.I mean, that's generally speaking, you're on your way somewhere else if you're in jail.That idea, though, of, you know, we can't let this guy die because he has more, you know, suffering to do before his sentence is up, That bothers me on a theological level more than anything else, I think. 

28:29 

I love that theological level.Absolutely.Like there's so much wrong with a statement like that.Yeah.Maybe for another episode.Yeah.So I do have a question, Stefano, something I was thinking about when we talk about what a warden can and cannot do, so can in Alabama and I think in a lot of states filter communication. 

28:48 

And that's actually I've this bit has been explained to me, like you were saying as a safety issue, that if some people in this person's life were to know they were in the hospital that you could get access to them, that might place them at a safety risk or their family at a safety risk. 

29:05 

And that actually does make sense to me.And so you have to have a relationship with a warden who's not trying to like punish, right in the, in the incarcerated person, right?There could be bad actors in this, but we'll presume that that's not what's going on.But my, my posture toward that has always been that there has to be such an explanation in order for us not to reach out that, that there really has to be a reason. 

29:28 

They can't just say, oh, I'm not going to call the family for arbitrary reasons.They have to say, they have to very affirmatively say this is a safety risk.They have to be able to explain that, right.And so sometimes we do press a little bit.If they say, no, we can't contact the family or, oh, no, I'm not going to do it.Say, well, we're happy to do it unless you think there's a, you know, unless you can give us a compelling reason not to. 

29:49 

What do you?Think about is that just to jump in?Do you think that's any different than the criteria we use in order to limit anybody's visitation to any of the patients, though there's something unique about being incarcerated that changes that? 

30:05 

Yeah.Stefano, what do you think?Well, so yeah, I, I think that the same basic premises there that there are situations where it isn't necessarily safe to have someone coming into the hospital.I think the only difference or distinction is in one case you do have a legal statement that a warden has this particular authority. 

30:28 

Whereas if it's, you know, the hospital having to make that decision, it's it's our own sort of policy that suggests that we have that authority.An additional wrinkle to this, they just passed a law in Alabama fairly recently that allows someone to designate a an essential caregiver who basically, without really strong reasons, is not allowed to be asked to leave the room at any time. 

30:59 

And this was some response to baggage from COVID when there were times when people really probably should have been allowed to have somebody in the room with them, especially if that person was willing to bear the risk of being in that room and they were excluded.So they wrote this law that basically says, you know, you can designate an essential caregiver, you can designate up to four and they can alternate. 

31:19 

And one of them has a right to be with you at all times with the exception of a sterile procedure or, you know, something where you're, you can't have somebody in the room or if there are behavioral dangers that arise.So there's like that additional layer kind of legal pressure to, to allow access. 

31:39 

But I think that really the distinction is just that a warden is named.But I tend to view that as a sort of a negative right, in that until they tell us no, the assumption is like any other patient, we can reach out to family for, for good or for I'll. 

31:56 

That's the way that I tend to interpret that authority.Yeah, that I think that makes a lot of sense.Yeah.So what one other question as we kind of wrap up this, this case, what is the rate or your experience with incarcerated patients having completed advanced directive paperwork? 

32:15 

Very, very limited.I don't have a specific number on that.Anecdotally, I've been here two years and we average about 5 to 600 consults a year.A lot of those are very quick.Hey, who's the surrogate phone calls? 

32:32 

They're not super involved, but so I don't know.I've probably been involved in close to 1000 situations and I can only think of one case where an inmate had an advance directive when he arrived.Now there have been some who have filled them out here, but I don't think it's very high. 

32:50 

Yeah.I, I don't, I, I guess when, as I think about that question, like I don't think I've ever read anything about those rates or statistics or outreach into that population for that point.But maybe I'm just ignorant on the literature.It'd be a great like in processing thing to do though, right? 

33:05 

If anything were to happen, what would you want?We do, we do have a, an intervention here where part of the nursing intake is asking some of those questions and it, it gives an opportunity to flag a chaplain to come and fill out an advance directive with a patient, which is AI think a really good thing. 

33:24 

Unfortunately, what we wind up with in a lot of cases is someone, even if they initially express interest, a lot of times when someone comes to actually fill the AD out, they're like, Nope, no interest in doing that, not going to talk about it or they have lost capacity.And then either case it becomes a a a moot point. 

33:40 

Well, Stephanie, would you say that this policy that you wrote, I mean, you were kind of already doing it, but you wrote it into policy it, it sounds like then it's been a huge success, right?So are other people now following your strategy?You think it's been mostly successful? 

33:55 

You said this, the jailers maybe not quite so much, but what do you think the success rate now is of this policy that you wrote?Well, I think the biggest challenge that we're running into now is education and dissemination of the policy.It's been, it's worked really well. 

34:11 

When we have done it, we've had multiple situations where we were allowed to get someone's daughter to see them, you know, at end of life and participate in their, in their at least the decision making around, you know, what that death looked like.I can think of multiple cases where we were able to accomplish that. 

34:31 

And I, I, I feel really good about that.I think it's been very successful.The challenge is an institution our size, it's been very difficult to to get that information out to the people.So we do a monthly didactic for the ICU resident group. 

34:50 

We do something with the ICU fellows each year as they come on board.We teach a didactic for the nursing residency, which, you know, all new hire nurses that are new grad nurses that are they come on board couple other little situations. 

35:07 

And we make sure to talk about this in every single, every single group of people that we speak to.And yet still in a lot of cases, we'll eventually get looped in and they're like, well, the warden's just been consenting to everything up until now.But somebody said maybe they're not supposed to. 

35:24 

So we thought we would call you.And we love those because we're like, sweet.It's an opportunity to educate everybody who happens to be standing in this corner.But I think that's the thing, it's been really successful.But we've, we've not, we've not come up with a comprehensive way to let everybody in the institution know, hey, the policy has changed. 

35:44 

And you know, we've thought about sending mass emails and things like that.But I don't read any of those.So I find it so.I mean, I mean I read them all and digest them deeply.But you understand the impulse not too.Yeah, Yeah, yeah, right.Exactly.Good. 

35:59 

Well, good luck on continuing to educate.That's such a big hurdle.You can have the perfect policy, but if no one knows it exists, it's not the perfect policy quite yet.Right, right.Yeah, that's a good point.Good.Well, thanks, Stefano.We appreciate you being here and thanks for telling us about your success story.Yeah. 

36:14 

Thanks for having me, this is really fun.Thanks for tuning into this episode of Bioethics for the People.We can't do it alone, so a huge shout out to Christopher Wright for creating our theme music and to Darian Golden Stall for designing our logo and all of the artwork. 

36:32 

If you're into what we're doing, give us a rating on Apple Podcasts, Spotify, Amazon Music, or wherever you listen.And if you're really into what we're doing, head over to bioethicsforthepeople.com to snag some merch.It's it's statutorily can't talk. 

36:55 

You might edit that out.It is.Statutorily granted to the Warden. 

Transcript

0:07 

Devin, we're back season. 6 Tyler, we're back season six.Can you believe it?No, I I can't believe we're still doing this, but here we go again.Here we go again by popular demand.People just love the podcast.Yeah, I cannot believe that we have so many people who not only listen but also care that we put out new content. 

0:27 

So this season is going to be a smorgasbord, a variety of different topics.So one of those topics that I'm excited about is success stories.So we're gathering stories from clinical ethicists around the country, maybe around the world, who have done something really positive for their hospital system, made a big change because they were there. 

0:51 

We spent a lot of time talking about difficult cases, a lot of episodes about really hard things in medicine and healthcare, but I'm excited to see what kind of success stories people are able to share.So really exciting.We're also going to talk about AI in healthcare. 

1:08 

Lots of interesting topics, questions, controversies, lots of confusion and clarification that needs to be.Set straight and we promised those episodes weren't written by AI.At least not all of them.So, Devin, we have very interesting jobs. 

1:28 

Often times people who I tell about my job are equal parts confused and amused that somebody gets paid to do something like what we do.But that got me thinking about jobs that maybe we thought that we were going to do. 

1:44 

So my question to you is, when you were small, what occupation did you tell people that you were going to have as an adult?The only thing I can ever remember saying as a kid was that I thought I'd want to be a lawyer because my mom was a lawyer. 

2:01 

And as she was really inspirational, so I thought, you know, and I like to argue.Perhaps because I grew up in a household where arguing at the dinner table was sort of a prerequisite to eating.That's hilarious.I've noticed that often children who have maybe better than average social skills, who like to argue, like to ask the question why can hold a conversation with an adult, often get told that they're they ought to be a lawyer when they. 

2:29 

Grow up.Do you think that translates into a good lawyer?No, I think it's got nothing to do with being a good lawyer unless you're playing a lawyer on TV.So when I was little, I always told people that I wanted to be a rodeo clown when I got big. 

2:45 

What?Who thinks of that?How did you even know what a rodeo clown was?Well, I grew up in Indiana there, I mean, rodeos, horses, outdoor, like, yeah, went to a County High school.So I, I don't remember when it started, but I think that probably I went to a rodeo County Fair, maybe as a small child and just latched on to telling people I wanted to be a rodeo clown and got some sort of funny reaction to it and kept doing it all the way through high school. 

3:17 

And I remember telling my high school guidance counselor who was concerned about my future, that I wanted to be a rodeo clown.And the next time that I had my follow up meeting with her, she had researched rodeo schools or clown schools in the South as an option for me after high schools. 

3:35 

I'd say I could see it, but that is a dangerous job, Tyler, I I just cannot see you running around in a clown suit trying to avoid the bull.Yeah, I think it was better as a as a kid.I I don't think that it would be something I'd be good at or enjoy at this. 

3:52 

Point your talents would have been wasted.You are my favorite podcast host of all time.Oh gosh, that's very nice of you to say.This season is gonna be, like we said, a variety of different things, topics, and it's gonna be coming out, episodes are gonna come out as we finish them. 

4:09 

So in the past, we've kind of tried to cluster them, but every Thursday, not every Thursday, let's be clear, many Thursdays upcoming in the fall, we're going to be releasing new content, new episodes.People are always welcome to send in more comments, more suggestions, more links to articles they'd like us to respond to on our website or however else they can. 

4:31 

Yeah, and if you didn't know, tons of great merch on the website, so check it out.Merch.My kids kept telling me that we needed to put some merch out.So we've got some hats, some coffee mugs, stickers.I tried to get us golf shoes with our faces on them. 

4:47 

No go.No go, too expensive.All right, well, we do have a surprising article of clothing on that website, so you really have to check it out.I don't want to spoil it.Yeah, all right.Season 6 coming soon. 

Devan and Tyler explore the Willowbrook State School, that stands as a stark symbol of the dark chapters in the history of medical ethics and public health. Willowbrook gained infamy for its association with highly controversial medical experiments conducted on children with intellectual disabilities during the mid-20th century. Led by Dr. Saul Krugman, the Willowbrook studies became emblematic of ethical questions about the treatment of vulnerable populations and the boundaries of medical research.

• “Willowbrook: The Last Disgrace” Investigative Report by Geraldo Rivera

• DuBois, J. M. (2008). A framework for analyzing ethics cases. Ethics in Mental Health Research, 45-57.

• Krugman, S. (1986). The Willowbrook Hepatitis Studies Revisited: Ethical Aspects, Reviews of Infectious Diseases, 8:1.

Transcript

0:03 

Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics.And he's Tyler Gibb, who, according to his students, is best described as the goat of bioethics. 

0:28 

Devin, it's my turn for a case.All right, can't wait.This case is really challenging, I think, but more so because it's like, emotionally provocative.OK, not, not that any of our cases this season haven't been emotionally provocative, but this one is, I think, particularly challenging. 

0:49 

OK, that's that's a lot to say because we've had a lot of tough cases this season.But this is also one that I think is probably one of the more commonly taught in kind of introduction to bioethics courses.And I know that you teach it quite a bit and I've taught it quite a bit too.So yeah, I'm happy to get into it. 

1:06 

So it's the case of Willowbrook.Yes, Willowbrook, this is a good one.So you've heard of Willowbrook?Of course.OK.So I'm going to kind of paint the picture of Willowbrook as an institution and kind of the history and kind of the dark, the dark past that came out over the the decades that it it operated. 

1:29 

But then, But then there's some interesting bioethical wrinkles and and issues that we'll get into at the end, OK?OK.All right, so the Willowbrook School was created in 1938.Ish.So it's in New York.It's on Staten Island.It was an institute that was paid for and organized and and run by the state of New York, OK. 

1:52 

And it was created at at a time when there was this outcry or this public interest.Or maybe it was even just a kind of a public perception that people who had mental disabilities or developmental disabilities that the best way to care for them would be to institutionalized them. 

2:12 

So put them all in some sort of group setting and care for them all at the same time and and all in kind of the same way.So this institutionalization kind of movement went through was all over the United States.Many, many states across the country had multiple state institutions. 

2:30 

Actually, here in Kalamazoo in Michigan, there's a a state institution for the developmentally disabled folks.But now it's just a state public psychiatric hospital.I bet they called it something that we would never call it.Today, yes, yes.Which doesn't even need to be said right and I. 

2:46 

So I think it's it's important the outset that we're going to be using terminology and language from some of the historical descriptions and accounts and stuff.That's language that you would never use, I would never use in my day-to-day life.And so I just want to put that caveat that some of the language is kind of rough and can be pretty triggering. 

3:04 

And also we're going to talk about children, disabled folks who are being treated in really terrible ways.So just want to put that out at the beginning.So during World War 2 this institution that was created in Staten Island had actually been taken over by the military and was a large army hospital operating in Staten Island during most of World War 2 and then kind of towards few years after the World War 2 and they did all types of the surgeries and orthopedics there a lot of kind of General Hospital medical care for veterans and and people who had served in World War 2 and subsequently. 

3:46 

So at some at one point they had 2500 ish, 2025 hundred is soldiers, veterans being treated on a regular basis at this hospital.Wow, okay, so large, many buildings, many different wings of these. 

4:04 

It was built to house about 4000 patients or 4000 people.So it's a large institution, sprawling, supposed to be very picturesque.And actually it's it's had been taken over by a State University, the State University system in New York and so it's now being re appropriated for something else, but it's a vast campus what we'll call it so. 

4:25 

That's typical, right?So from what I understand of the institutionalization process, there was this idea that being part of the land, being able to work the land and teaching people how to work the land and get and being physical was part of the rehabilitation process. 

4:43 

So for some of the institutions, it was teaching folks like how to earn a living on their own.The idea was that they would come and get educated and then they could go back into their communities.And so you'd needed a space where that could happen.So it was a kind of very idyllic setting for these institutions. 

5:00 

Not always, but it sounds like for this one, that's true.Right.So the setting was very much part of like the the the ethos of the institution like like you said job training ideally education.So there's a school component to it.And so it was a place where families who had children who they couldn't take care of for a number of reasons. 

5:20 

Maybe it was just physical disability like we give it a severe case of like a a severe case of cerebral palsy or spina bifida or something like that's very physically debilitating and and many families and communities struggle to provide adequate resources for for folks like that. 

5:39 

And so being able to have a safe place for families to kind of entrust their loved ones was a really important part of how they were trying to love and care for their patients.And Willowbrook was described and advertised as a very idyllic situation. 

5:56 

They had all the resources, they had facilities, they had experts.And so families were eager.And there's actually a waiting list to get people into this institution.And so it was really well marketed.At first, isn't that how bad stories always start?That's.Right.There's this glossy, you know, it's before the days of like a glossy brochure. 

6:15 

But you can imagine that as like, you know a glossy brochure of send send your children.And.And I think it's important to say at the very beginning that families entrusted their loved ones to this institution out of really good intentions and out of love. 

6:30 

And unfortunately, the funding from the state was never consistent and never as much as it needed to be.And over time, there got to be overcrowding and the constriction of resources.And eventually, over a number of years, decades, it, it developed into a place that was really, really different from the living conditions that these families hoped that they were entrusting people, their loved ones into. 

6:59 

Yeah, and.And people didn't tend to visit a lot, right?So maybe it wasn't obvious that things were getting worse and worse if you if if it was far away from where you lived and you didn't have the opportunity to go and visit very often.Exactly.And some of the the visitations especially when people of leadership in the state or politicians or whatever, whenever they would come to visit these announced visits, they did a really good job of cleaning up the facility and and making it look like things were as they should be and not not showing actually what the the day-to-day life living situations were. 

7:34 

And so, like I said earlier, families were eager and looked forward to and advocated to get their children into this institution because they thought it was the best place for them.Yes.And this is where I think it's important to paint the best of intentions of families, because I think it's easy to look back and say, you know, people were just dumping their children off, that they didn't care about their children. 

7:55 

That might be true of some people, but I don't think it was true for the vast majority of people.Yeah.And it I think it would be wrong for us to assume that that was the intention of most of the folks who who ended up there as well and even the people who worked there and maybe even did some of these things or allowed some of these conditions to continue like it's it's hard for me to assume malice, right. 

8:18 

So I don't think that these were necessarily evil people, although some of the decisions that were made are pretty hard to hard to justify.So the institution is running in the late 40s, in the 1950s and the 1960s and the 1970s and as a military hospital it had a really good reputation. 

8:36 

It was kind of like the Walter Reed of that region where families and veterans they would seek out care there.And over the course of the as it transitioned into a long term care facility for developmentally and physically disabled individuals, children specifically, the reputation definitely changed. 

8:55 

And there there were reports and rumors and allegations of mistreatment and neglect and and stuff that started percolating and started building up to the point that one of the state senators did an unannounced visit to this institution in the mid 1960s. 

9:15 

So quick question, Devin, who is your favorite Kennedy?Robert, of course.Which, oh, good, Robert.That's my favorite as well.So Robert F Kennedy, brother to to John F Kennedy. 

9:32 

So this was, yeah, he was a state senator at the time.He went on to obviously be the attorney general and the nominee for the president for his unfortunate assassination.So he went and visited Willowbrook and took along reporters and kind of his aides and his whole entourage, and they did an unannounced visit. 

9:53 

And he came away, I would say, shocked and horrified at what he saw.So I'm going to play a brief video clip of him recounting that, OK?I visited the State institution for the Mentally retarded and I think that particularly at Willowbrook, that we have a situation that borders on a stake pet and that the children live in Bill. 

10:18 

That many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower, with very little future for the children or for those who are in these institutions.Both need a tremendous overhauling. 

10:34 

I'm not saying that those who are the attendants there or the ones that run the institution are at fault.I think all of us are at fault.And I think it's just long overdue that something be done about it.Who has that accent anymore?It's just such a perfectly Kennedy accent accent. 

10:51 

Yeah, I don't know anybody who speaks like that.Maybe maybe if we lived in Massachusetts or you know, someplace in New England we would hear that more often.But it is such an iconically Kennedy like phraseology and accent.But anyway, so a snake pit, right?And and again, let's just, let's just keep in mind that these are children, right? 

11:10 

And not just These are children who are particularly vulnerable to mistreatment because they're they're disabled children, right?Yeah, so horrifying.So he was horrified.Horrifying.We should be, we should be horrified. 

11:25 

We'll we'll post, I'm sure, links to some of the documentaries that are horrifying.Yeah.Yeah.And so his quote is living in filth and dirt and their clothes in rags and in rooms less comfortable and cheerful than the cages in which we put animals in a zoo. 

11:42 

And so after this he takes us on his one, his one of his primary causes as a, as a, as a politician, as a representative of the people and makes a lot of, I would say makes a lot of noise about this. 

11:58 

But and and there's some agreements between the state and the institution and the parents about improving conditions and and getting adequate resources.But it didn't actually change much over the subsequent several years.Yeah, Robert Kennedy dies and not too many years later and has moved on to different political offices. 

12:19 

And so the issue kind of it came to the spotlight for a moment, but then it there wasn't really staying power.And part of that I think is because it was him recounting what he saw, right.There were some photos that were distributed in in the media, but he wasn't able to really, I would say really make the case or make this tell the story in a way that had as much impact as it needed to. 

12:46 

And the Kennedys have always been big proponents of disability rights, so this sort of falls in line with kind of the whole Kennedy ethos around this.So it's interesting, but and interesting that it didn't win people over in the way you would have expected.Yeah.And I don't know enough about that kind of that moment in the history about what did did Kennedy after he kind of took this on and saw this issue did he you know what what the timeline was before him going into national office and maybe it kind of fell off of the the radar to a certain degree. 

13:16 

But in let's Fast forward a couple of years to 1972.OK.So there's an investigative journalist who meets with who would we would describe as a whistleblower now a whistleblower who worked at the the Willowbrook school and this was a healthcare provider and he was horrified, disgusted, outraged at the condition of these children. 

13:41 

And he had tried to go through the the Gen. the normal routes avenues of advocating for the patients and making noise internally into the in the institution advocating for change, but was ultimately unsuccessful and left his position there. 

13:57 

But he kept a key to one of the buildings, and it was Geraldo Rivera and his yes, so Geraldo Rivera.So Geraldo Rivera was this investigative journalist in the 1970s in ABCS affiliate in the greater New York area. 

14:16 

And he went there with this stolen key.It's described in the in the the literature is a stolen key and went in through one of the back doors of the institutions with the film crew and filmed what was going on.And I think the combination of the advocacy kind of the change in the culture or between the mid 60s and the early 70s, but also having video of what was going on really struck a nerve with culturally. 

14:49 

Yeah, it was a moment and I'm sure the video helped.If you've seen the video, it is horrifying.It it it's one of the more troubling videos that that I've seen.So I'm just going to play a clip of him.So this is Geraldo Rivera introducing his the the news piece that he created. 

15:07 

It's been more than six years since Robert Kennedy walked out of one of the wards here at Willowbrook and told newsmen of the horror he'd seen inside.He pleaded then for an overhaul of a system that allowed retarded children to live in a snake pit, but that was way back in 1965, and somehow we'd all forgotten. 

15:25 

I first heard of this big place with the pretty sounding name because of a call I received from a member of the Willowbrook staff, a doctor, Michael Wilkins.The doctor told me he'd just been fired because he'd been urging parents with children in one of the buildings Building #6 to organize so they could more effectively demand improved conditions for their children. 

15:44 

The doctor invited me to see the conditions.He was talking about South, unannounced and unexpected, by the school administration.We toured building #6.The doctor had warned me that it would be bad.It was horrible.There was 1 attendant for perhaps 50 severely and profoundly retarded children, and the children lying on the floor, naked and smeared with their own feces. 

16:06 

They were making a pitiful sound, the kind of mournful wail that it's impossible for me to forget.This is what it looked like.This is what it sounded like.But how can I tell you about the way it smelled?It smelled of filth, it smelled of disease, and it smelled of death. 

16:23 

So horrific.Yes, that's the clip I always show my students.The the clip of him running across the field into the Yeah, it's it's it's tough to watch and and just seeing the images and there it's like darkened spaces and it feels like, do you remember the movie The Blair Witch Project? 

16:46 

So like the found video where they're like running through the forest and you can't really tell what's going on.It's bouncing around.That's what it feels like, right.It feels like a horror show.And the one of the other journalists that was with her all the Rivera started publishing, you know, after that, that the interviews that they did and the material that they gathered over the course of about six weeks, repeatedly, more and more stories almost every day. 

17:11 

And just kept it kept hammering and kept hammering and kept hammering.And that was the the moment in which all of the spotlight came on to Willowbrook.And eventually over there was a class action lawsuit by the parents claiming that they were their children are being neglected. 

17:28 

Also claiming that they were they had enrolled their students in this school, institutionalized them with under false pretenses and and they weren't being their basic needs and their basic civil rights were being violated.Yeah, hard to argue with. 

17:44 

Yeah.So question then.OK.Why is this a bioethics issue?Why is this a case that we all teach and that we all, we all talk about so much?Yeah.Well, I think you could probably bring up Willowbrook as a you know case study in and of itself of of related to disability in the way people with disabilities are taken care of in our healthcare system, in our education system. 

18:10 

What you just laid out to me is bioethics enough.But the reason that it gets taught is because a group of researchers came into Willowbrook and conducted a study on the children at Willowbrook that is hard to imagine whatever happened today. 

18:29 

And it's that case that that research that they did that really gets talked about in bioethics a lot.Right.So looking at this situation with the school, with the the neglect and the under resourced and these children, as many as 6000 children lived in this institution at one point at its largest, so 50% more than it was built for. 

18:51 

So overcrowding, really, really tough circumstances.On top of all that there was a group of researchers who were using those children as subjects for human subjects, research, experimentation. 

19:08 

So another random question.Devin, what's your favorite sexually transmitted disease?Cut that.Cut that right out of the podcast.All right.So hepatitis, Not my favorite.OK, OK, so. 

19:23 

Hepatitis during World War 2.So Willowbrooks history really is rooted in a lot of the experience of World War 2, right?So during World War 2, hepatitis was rampant.So as many as 50,000 American troops alone contracted hepatitis at some point during the war. 

19:42 

And so it was a big issue for the surgeon general, for the Department of Defense to like figure out what is this disease, how does it transmit like what's going on the etiology or the epidemiology of it, right.And of course, hepatitis is not just spread through sexually transmitted practices. 

19:59 

So did you know this is one of the most interesting, one of the interesting things that we'll talk about that we didn't know that there were two types of hepatitis.There's the one that's transmitted through like blood and fluids.That is hepatitis B. 

20:16 

And then there's hepatitis A, which is transmitted usually through like fecal contamination, so like dirty water.So we didn't know that that was the case until Willowbrook.Until the.Willowbrook study.I didn't know that.Wait, what's hep CI?Don't know another another version but but early in so late 1940s, early 1950s, when the researcher who's named Saul Krugman him and his team before they started their project, the 1950s, there was no differentiation in hepatitis. 

20:53 

Like we knew that it what it was, but we didn't know that there were different types and also we didn't know what the natural course looked like from infection all the way until death.Right.So that was that was the research project that Krugman and his team wanted to the questions that they wanted to answer, and through various personal and professional contacts, they had access to the Willowbrook School. 

21:18 

They knew about it, knew the conditions, and decided that this would be the ideal situation in which we can study hepatitis and figure out what's going on.Why?Why would this be the ideal place, Tyler?Well, well, that's a great question, Devin. 

21:34 

Why would an institution that is rampant, terribly overcrowded, rampant hygiene issues, and really difficult from a people management perspective, right? 

21:53 

So kidding, overcrowding, all of those issues.Why would that be an ideal situation in order to test or study the the lifespan of a disease that is transmitted through poor hygiene?Yeah. 

22:08 

I mean, off the top of my head, there are two reasons.The 1st is that they're probably getting it right.So like the people who reside at Willowbrook, if it's unsanitary, might be getting hepatitis.And so you know, their their population, we can isolate.And relatedly, they live in a confined space where they're easy to control. 

22:29 

So you can control just about every aspect of their lives because they reside in a facility and their meals are taking care of, like everything about their daily life is controlled by the environment.So in that sense, you know, they're easy to manipulate for the purposes of research because you don't, you don't have to control for a lot of other factors that you would with somebody who doesn't live in a facility. 

22:53 

Exactly.It's a situation in which the, the researchers have a lot of control over the variables that go that would go into the lifespan of this disease.And like you said, the infection rate for hepatitis at this institution was like unbelievable, like everybody, like 98% of people within the first six weeks got infected with hepatitis. 

23:19 

It's just like an unbelievable infection rate.It's it's almost like it's it's like you couldn't create a a set of circumstances in which hepatitis could be more infectious right.It's like the ideal perfect storm for hepatitis type of infections.So this is interesting because the one of the reasons or one of the rationales that the researchers put forth was these children, they're coming to this, they're being entrusted in us to give them care and they're going to get infected anyway. 

23:48 

So let's infect them in a way that is controllable, as predictable and maybe even we can control how much infection they get and what over what time span to help increase their immunity.Yes, which is always the thing that horrifies my students when I first say it is. 

24:07 

They say, well, you can't give people an infection like that, right?We don't in research give people viruses or infections or make them sick, right?I say, well, actually we do sometimes.But if you're going to do that, you have to have a pretty darn good reason to do it. 

24:24 

And you're going to get it anyway.I don't know if that's the really good reason that we're looking.For right.Well, it's not in and of itself a reason, although sometimes in in research ethics we talk about risk to participants being no greater than the risks they encounter in their daily lives. 

24:41 

And so that's kind of how you want to balance risk is you don't want to put them any participation in research, put you at some level of risk.And so the only way to justify putting people at risk is, or one of the ways to justify it is to minimize it as much as you possibly can, but also compare it to the risks they take on in their everyday lives. 

25:01 

And if in their everyday lives they're almost certain to get this anyway, you can see how that is a kind of justification for doing this.Right.And I think it's important, as we talk through this and and kind of talk about the ethical principles that were maybe violated or at least in question, that we keep in mind that I don't think that Saul Krugman was an evil person. 

25:20 

I don't think that he was intentionally inflicting hepatitis on children because he got some sort of perverse joy out of it.I think that he was a a researcher who was trying to answer a research question and he's presented with a very unique set of circumstances and he tried to do the best he could with kind of what he was presented. 

25:39 

Yeah.I I think it's you can disagree with what he did without painting him as some sort of like malicious figure.I I do question but I I think he had it in the if I'm going to give him the benefit of the doubt he really thought hepatitis is terrible it's hurting a lot of people. 

25:57 

We have a unique opportunity here to solve the hepatitis epidemic.I'm going to go for it.It's important to note also that this research project was not without criticism even at the time.It was controversial even at the time.One of the most important papers in bioethics and medical ethics is was written by Henry Beecher, right. 

26:18 

We talked about this in previous episodes.In 1966, this Seminole paper came out talking about human subject research and unethical research practices, and it listed, I mean he called out by name a number of different research projects that were either recent or ongoing that he would categorize as ethically problematic, and Willowbrook was one that he pointed to even in 1966. 

26:43 

That's right.Although he also pointed out Tuskegee, right.And that didn't that had been going on for quite a long time.Yes, he did.He did call it Tuskegee as well.Also hepatitis study.I mean, I tell you what the the US was committed to, no?That was a syphilis study.Oh, that's right, syphilis. 

26:59 

I I always get my STD's mixed up.These children didn't have STD's.I know, OK.I know you know.Syphilis OK, help me understand like it's easy.So it's easy to look at these studies, these cases that we talk about historically and look back at them and with our the, I've heard the term a retrospectroscope, looking back in hindsight and judging them really harshly, saying this was unethical, that person was bad, we would never do something like that today. 

27:33 

Is that often that's not the case right now?I don't know.Yeah.Help us think through that, Devin.Yeah, I I'm OK off the top not going to defend Willowbrook.I mean I think what happened there was unethical and I I want to get into why and I so I think, but I think actually this case and This is why I teach it is a little bit more complicated than maybe our gut reaction to it. 

27:57 

And so I think the details matter.Unlike something like Tuskegee, where I think wholly unethical if not evil from the get go, there is very little, really nothing in my mind to justify Tuskegee, just an evil, horrible research project that happened over the course of many decades. 

28:19 

Willowbrook is not quite so simply bad for I think a few reasons.And maybe we should do a whole separate episode on Tuskegee, because I think even though it's terribly problematic and and there's no way to justify it, it's worth understanding the details. 

28:34 

Because actually most of my students, even a lot of people I meet, do not read like they've heard of Tuskegee but they don't really know anything about it.So it's worth it's worth it's worth going through the worst cases to to know what we really have learned from them.This though, I think I teach it as actually a pretty complicated case. 

28:54 

How is that how you teach it as complicated?Or is it just obviously bad?No, yeah, it's it's complicated.I generally use it to talk about disability like public policy changes and how it is a catalyst to some of this the like the Americans with Disabilities Act and like all of those things. 

29:11 

So that's generally how it comes across in my material.But I also don't teach like an entry level bioethics class right now.But where where I would teach it more like the details of this case and some of the anecdotes and kind of the the colorful little descriptions that come out are just so emotionally evocative, right. 

29:30 

Like when they talk about the way in which so we we said that they intentionally administered hepatitis to children.They did.They had to eat it, right?Right.It they, they put it in their chocolate milk and fed it to him, Right.And so you hear about a contaminated chocolate milk being fed to a disabled child in an institution and like, you know, we're ready to fight somebody, right? 

29:52 

But I think it's important to to help us walk through the nuance of it.OK, so when I talk about with my students, here's how it it The time was justified.And actually I'm taking some of this from.We have a former professor that taught us at SLU, Jim Dubois. 

30:11 

He's now at Washington University and he has a really good paper on this where he's actually just talking about research ethics in general, but uses Willowbrook as a case study to think through the kind of principles of research ethics that are slightly different than clinical ethics. 

30:29 

And the big difference, of course, being that in clinical ethics we're always thinking about the good of the patient.But in research ethics, the primary goal is not the good of the subject.The the purpose of research is to create generalizable knowledge that can benefit society.And so we're asking individuals to take on risk to themselves for the benefit of future people. 

30:48 

And so we have different principles insofar as, you know, we're not really at all benefiting the individual.If we do, usually it's just by happenstance.Or if it turns out the research works.But that's we can't assume that.We can't assume that, you know, the research project's going to yield some sort of result, like a vaccine. 

31:07 

There's a term for that, right?It's it's the therapeutic misconception, right.And this idea that you're going into the research study and we hear this all the time with like cancer patients doing experimental, going into a research protocol should be with the intention of benefiting science, right? 

31:26 

If you individually benefit, that's great, but that should be the primary motivation.And if it is, there's a misconception about that.And that's where that term comes from, so.Right, right.It's really hard to get rid of that.Except people think, oh, sure, sure, sure, future people, but also maybe me.And it's hard to get rid of that.But we, we try to minimize that. 

31:43 

OK, so duopoly lays out four Actually 5 principles that you should consider in research ethics and how they apply to Willowbrook.The 1st is this idea of necessity.So is it necessary to infringe on the values or norms of one population for the intended goal of the future population? 

32:05 

So in other words, can we use these children?Can we infringe on their values and norms or or their, you know, kind of person bodily integrity, I might say, for the benefit of a of a future population.And it has been suggested that, you know, because they're children, that leaves them in a vulnerable state. 

32:28 

And the obvious response to that is why wouldn't they just use a population of adults?And it turns out that hepatitis is way more lethal in adults than it is in children.In fact, most children will do OK Which isn't to say children never die of hepatitis, but this particular strain of hepatitis is way riskier for adults. 

32:51 

And so I children are a better population, Can we infringe on, you know, the the norms of this particular population?You justify that by saying actually it's way less risky for children than adults.So in that situation, the child population of the pediatric research population is actually scientifically a IT. 

33:11 

There's less harm associated with doing the research in that population versus an adult population.So for that reason it it might make sense.Yeah, yeah.So the population in that sense, to use them instead of adults makes sense.So you would of course always have to justify why children and not adults because children can't give informed consent. 

33:28 

And so we always want to make sure that we're using adults if we can.But insofar as adults are much more likely to become seriously ill from hepatitis and children, children are actually a much safer population to do a project like this on.The second principle is effectiveness. 

33:46 

So this is this one's a little complicated.Like, how much evidence do we have that the research will yield positive results?So we cannot, we absolutely cannot know the future.Most research will not yield something like a vaccine.Most research fails to find or produce the thing that it intends to. 

34:07 

You can have a whole conversation about like the Pharmaceutical industry and why drugs cost so much, but they always say that this is part of the reason is that most of these drug trials will fail.And it's not just limited to drug research, right?This is all research.The vast majority of all science research does not right result in the outcome that was expected or anticipated or hoped for. 

34:29 

Right.But if it doesn't mean then that we can just say, yeah, go ahead and try.Most things fail.It's fine.You have to have really good reasons to think that the thing you're testing for will result in something positive, that it has like scientific merit to it, that you haven't jumped from, you know, theory to children, Right. 

34:49 

So you have to do some animal studies.You have to go through the process of the phases of human subjects research.And so you have to have a pretty good reason to think that the thing you're doing will be effective, even if you can't know that for sure.And the justification from these research researchers was, you know, they had done animal trials, they had done a few smaller population trials, but also that vaccines were booming in the 60s. 

35:13 

And so there was real optimism that these researchers, you know, they had the tools and vaccines were becoming so viable that this really could yield an effective vaccine.So there was great optimism about that.The third principle is proportionality. 

35:29 

So is the desired goal important enough to just to justify, you know, the potential risks and harms to the population you're testing on?So you wouldn't give these children hepatitis if hepatitis, you know, wasn't really a big deal, like very few people ever got it. 

35:46 

It wasn't really hurting anybody.You don't do it.You don't do research for the sake of research.You do it because it's a you're researching something for the public good and the risks.The more risks you put on participants, the more important that becomes. 

36:03 

So if you're you got to be researching something pretty darn important to infect children with hepatitis.But their rationale, like you said, is hepatitis is really bad at this time.There is a huge population dying of hepatitis A vaccine is really important and so it was justified that the proportion seems justified. 

36:23 

Yeah, yeah, that makes sense too.The 4th principle is least infringement.So are you doing everything you can to minimize the infringements or the the risks to the participants?And Dr. Krugman and colleagues said, you know, we're doing everything we can there, not responsible. 

36:40 

This is a kind of different argument.They're not responsible for cleaning up Willowbrook, right, that that's not what their job is, and they wouldn't necessarily even know how to do that as researchers, as vaccine researchers.But they were putting these children in a special wing of Willowbrook.They were cleaning up their hygiene in. 

36:58 

By all accounts, the children in their research wing were better off than the children in the and the rest of Willowbrook.So that's how they justified sort of minimizing risk is that these children were not in any more risk.And in fact maybe we're at less risk in their everyday lives for all sorts of things than the children who resided in Willowbrook, who were not part of the research study and they sought parental permission. 

37:21 

So it's of course children, and especially these children can't give informed consent, but they did seek it through their parents.I'm glad that you brought up the informed consent issue because that to me that that's one of the things that sticks in my mind is being OK.This isn't just researchers who were in a unusual situation, made questionable decisions, and maybe they compounded and resulted in this like bad situation. 

37:46 

It's the informed consent thing that I have a hard time getting around, OK?OK.OK.So say more.Yeah.So like I said earlier, there was this advertising campaign, this promotional effort to get people to come into the institution, right? 

38:04 

So there is this waiting list.Krugman and his friends at Krugman ET al.Actually used that as a a way to entice people to participate in the research, and so I was able to find an old copy of one of the original informed consent documents. 

38:24 

So let me send that to you.I want you to take a look at it and maybe read read it out loud and and tell us what you think about it.OK, wow, I can't believe you found this.So the date on this is November 14th, 1958 Deer, and it's blanked out. 

38:41 

Redacted.It redacted.Hepatitis is an illness characterized by abdominal symptoms, fever, jaundice and general malaise.It is more severe in adults than in children.It is caused by a virus spread from person to person.OK, so far so good.Very like good 8th grade, you know, reading level language in cooperation with the pediatric staff of New York University, Bellevue Medical Center. 

39:04 

So this was the 5th principle, just to say you have to go through the proper process.They did.They got approval to do this study.So in cooperation with the pediatric staff, we are studying the possibility of preventing epidemics of hepatitis.On a new principle, virus is introduced and gamma globulin given later to some, so that either no attack or only a mild attack of hepatitis is expected to follow. 

39:28 

This may give the child immunity against this disease for life.It doesn't say that I added that we should like to give to your child redacted this new form of prevention with the hope that it will afford protection. 

39:44 

Permission form is enclosed for your consideration if you wish to have your child given the benefit of this new preventative.Will you so signify by signing the form, having it witnessed, and returning it to me at your earliest convenience?Wow.And so the and.Yeah.And so the subtext of this is if you do this and sign this permission slip, then you will have a favorite place on the waiting list. 

40:05 

You'll be able to get admission.So what are your thoughts?So a couple of thoughts.This is one of the huge criticisms of this study.And I think one that is really important is that if you're on a waiting list and enrolling your child in research gets you into the facility that you've been waiting for, that sounds to me like an undue inducement, meaning you might not have enrolled your child in the study, but you got the huge benefit of getting them some other good and that probably manipulated whether or not you wanted to enroll them in the research. 

40:43 

So you're being, you're being pressured, you're being manipulated in some way in taking a risk or putting your child at risk in a way in which you wouldn't otherwise do, right?Right, right.You might not have said yes, but for this and in that sense, we don't want to, you know, pressures may be a good word because it's not necessarily coercing anyone. 

41:03 

Sometimes we use that word coercion.I think it's too strong.In many cases, something like pressure or you know, the the technical term is undue influence, which can mean a lot of things.That could mean like, if I said I'll pay you $1,000,000 to do this study, you'd be like, OK, sign me up and you probably wouldn't even read the potential risks, so maybe undo it influence. 

41:24 

But also like, even though it's very like straightforward in a lot of ways, it also kind of conceals what's really happening.Like it doesn't outright say we're going to feed your child this virus, at least to me it's not.I'd have to read it a couple times to get that from this. 

41:42 

I I don't think you would ever get that to that right.And so it says this virus is introduced right and gamma globulin given later to some.Right.It doesn't.Yeah, it doesn't necessarily.It's not clear that that means I will feed it to your child through their chocolate milk. 

41:58 

Right, yeah, exactly.And the the, the phrase to some causes concern, right.I mean if it's a double blinded study, I mean if there's a control group, I mean all of these questions that we would ask now about wait a second, So the gymnoglobulin is what the treatment that you think is going to be better than what's going on, but only some of those children are going to get it. 

42:20 

OK, so who gets it?Who doesn't get it?Like, what happens if my child is in a group that doesn't get it?Will they eventually get it?Yeah.Well, these are all questions that I'm sure are addressed in the appendix that comes with this letter.No, that's not the case. 

42:39 

Yeah.And so I think so informed consent, the vulnerability of the patients, the the, the situation at Willowbrook, how it was really, really terrible, horrific at the time that this research project was going on. 

42:56 

Like all of these things kind of coalesce into this perfect storm of this.The things things did not go right in this situation.So what Dubois.And actually, I think I, I don't think I definitely agree with him.Well, let me so back up a second.When I do this case with my students, they can actually usually come to those five prima facie principles. 

43:17 

And so we chart it.I have them do this sort of mind map where they're they're trying to connect these facts with values and and whether or not this is a ethical research or not.And they'll have a lot of lines actually that go toward yes, this is ethical. 

43:33 

In fact, more lines that say this is ethical and they'll only have a couple of lines that go toward the idea that this is unethical.And the two lines are, you know, the what we just said about the informed consent being not great.The 2nd is this idea of vulnerability. 

43:51 

It's triple vulnerability.Their children, children are more vulnerable.They're disabled.So it's the intellectual disabilities make people more vulnerable to certain kinds of research and they're institutionalized.So that's that's three kinds of vulnerability. 

44:08 

And so you can't imagine really I can't imagine a more vulnerable population than the children at Willowbrook.And so to choose them needs a huge justification and to my mind the only way today.So this is pre common role which is the the current federal regulations that tell us about ethics and research and it talks about vulnerability in particular. 

44:32 

So today we would say the only way to justify doing any research on that population would be that they are really singularly the only population having the problem being researched and that the benefits would only accrue to them.That is definitely not the case. 

44:47 

We have a huge population that can serve as potential subjects because it's a huge general population that can get hepatitis.So they're not singular.And they're they might be singular and like, that's the perfect storm to get hepatitis, but they're not the only ones who can. 

45:03 

And so it's you can't justify using them, this extremely vulnerable population, to accrue benefits to a much larger population that includes them.But it's not singularly them.And that's, to me, the only way you could plausibly do this research. 

45:19 

And I think that's hard for people who kind of don't get into the weeds about research ethics to to to start to wrap your head around is like there are situations in which this population in this setting can can not only participate but be the beneficiaries of research. 

45:40 

But this just wasn't the case, right?This wasn't this.This was more a situation where this population was chosen because of convenience and not because of this is the the science was driving the selection of this population.Yeah, I I think ultimately you can say that. 

45:56 

And so it's not quite as clear as like this was the he was just, you know, trying to prey on this vulnerable population because he could and it was mere convenience.He had other reasons, but ultimately I don't think those reasons were good enough to use this population.Krugman went to his, his, his coffin, his deathbed, arguing that he did nothing wrong and that they followed all of the the ethical principles, and it was justifiable. 

46:17 

And there were notably, notably good, quote UN quote, good outcomes, I guess.So we talked about earlier the the actual science, the understanding of the Physiology, the pathophysiology, and the process of the disease itself. 

46:34 

We learned a lot from Willowbrook.Yeah, well, they came up with a vaccine, right?So, you know, they they were able to do the thing that they set out to do, which is in itself incredible.It doesn't post facto justify what they did to the subjects.Yeah, we, we, we get this question a lot when we start talking about some of the research experiments that were done, quote UN quote research experiments, the human experimentation done during World War 2 by Nazi doctors and and you know, physicians in other parts of other countries as well. 

47:07 

There are some things that science has learned from those studies, but that doesn't retrospectively justify what happened to those people, right?And we can still, not even, we can still use that scientific knowledge to continue kind of the our understanding of of humans and science and and medicine without also having to accept the way in which we got that information right. 

47:29 

Is that how you approach that?I, you know, I actually leave it up to my students to decide because I'm, I think there's still maybe good reasons to throw it out, even if it can save lives.I mean, like, apparently every almost everything we know about hypothermia was done by the Nazis in the most terrible ways. 

47:48 

And it's still the kind of not the only knowledge we have because you just can't, like, let somebody almost die from hypothermia like, as part of your research anymore.And so it's really hard to replicate those studies in an ethical way.But I I think it's, for me still kind of, I feel pretty conflicted. 

48:03 

We would say today, if it turns out that your research was not done in an ethical way, it will not be published or it will be retracted.And so we do actually take away that knowledge in some ways.So if you were to do any of that stuff today, we wouldn't use it.So why is it OK that we, you know, the the Holocaust wasn't that long ago. 

48:22 

You know, what the Nazis were doing, The Nuremberg trials were not that long ago.Where do you draw the line?I think is for me still.I still am pretty conflicted about it.I thought I had a good answer to this until we we hear it.At my school we hosted a woman who was one of the last surviving last survivors of Mangalas, actually her the twin medical experimentation. 

48:47 

So she was one of the twins and so she came and visited and and she really powerful woman it talked about her experience and and so she she was in I can't remember it was Auschwitzer Dachau but she was one of the concentration camps she like interacted with Mangala she had a twin sister who received different treatment like experimentation than she did And and so she talked about this experience and I was sitting next to a woman who was in our department who has who is Jewish by background and bioethicists really well read really insightful I after after the media after the the lecture. 

49:23 

I asked Eva Moses core who is the woman who was visiting one of the maybe it was one of the the audience member asked her this question like what do we do with this knowledge that came and her response was if we don't do something with that information that came out of these experimentations then we're dishonouring the legacy of people who who had to go through that right. 

49:43 

And it was very very much in the in the spirit of like forgiveness and moving forward and reconciliation.And I was sitting next to this other woman and she leaned over and she said, I completely, really disagree with that.She said it has to be the only way to honor those people is to suppress it and to not like build upon that foundation. 

50:00 

And so I was like, gosh, I mean these two really eloquent, smart, like the invested people coming to very different conclusions for kind of the same reasons.I was like, I don't know this, this is.This is why ethics is so interesting and so hard and so complicated and changing, I guess. 

50:17 

And that's why we love this field is because there aren't easy answers.Yes.In fact, there are no easy answers.Trademark.OK, So yeah, that's Willowbrook.What else?Anything else that we missed?You know any Nuggets or tidbits that you impart upon your students when you're covering Willowbrook? 

50:37 

No, I mean, I think what I want my students to really get out of the exercise of going through is to say there might be 20 plausible reasons why something like this is ethical, and only really one or two reasons why it's unethical.But those reasons are so strong that they outweigh all of the other reasons. 

50:55 

And that's OK.So it's good to dissect the case.It's good to think through the ethics of it.At the end of the day, there might just be 1 ethical principle that it is too weighty it it weighs it outweighs all the other justifications and and that's OK and that's some that's why I teach the case. 

51:12 

I mean there are actually a lot of reasons I teach the case because I also do disability rights and disability history.So it's important this is an important moment there but it's also to show my students that it's on balance.You don't have to say, oh, there are six reasons why this is ethical, 7 reasons why it's unethical.So therefore you know, one with no some principles are more weighty than other principles. 

51:32 

Yeah.And that gets into the even bigger questions of how do we weigh different ethical principles against each other, Right.And so, yeah, that's some of the Gray area that we love in bioethics, so.Yes, we do.All right.Thanks, Tyler.That's a good one.Thanks for listening to this episode of Bioethics for the People. 

51:48 

We can't do this podcast by ourselves.We've tried and it's not pretty.Our team includes our research interns, Michaela Kim, Madison Foley and Macy Hutto.Special thanks to Helen Webster for social media and production support.Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two, and husband to one. 

52:08 

Podcast art was created by Darian Goldenstall.You can find more of her work at dariangoldenstall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.We love to connect with our listeners.All of our episodes can be found wherever you listen to podcasts. 

52:26 

Please like, subscribe and share and connect on social media. 

Dax Cowart was severely injured in an explosion in the 1970s. Despite his injuries, he expressed a strong and consistent desire not to want medical treatment for his injuries an to be allowed to die. In this episode, Tyler and Devan explore the landmark bioethics care of Dax Cowart and its importance to current questions about medical decision-making, capacity to refuse medical treatment, and disability.

Links to Sources and other Interesting Stuff:

“Dax Cowert, Who Suffered for Patient Rights, Dies at 71” The New York Times, Obituary, May 15, 2019.

Documentary: “Dax Cowart — 40 years later”

Transcript

0:03

Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics.And he's Tyler Gibb, who, according to his students, is best described as the goat of bioethics.

0:28

Devin, I got a a banger of a case for you today.Oh, a banger of a case.OK.Yeah, this has everything if we're going by the the theme of Stefan.So lawyers involved, there's issues about disability, there's issues about consent for incapable, type of patience, mothers involved.

0:52

God is invoked at some point.Oh my gosh, it really does have.These are like all my favorite things.Yeah, I mean, if we could just work in, I don't know what's another of your favorite things that we don't get to talk about very much.Nope, that's it.That and and my children so.

1:07

Yeah, I I don't.I don't think the little ones are going to make an appearance in this episode, but it's.Probably for the best.All right, so this is the the case of DAX cohort, and there may be some disagreement about how to say his last name.I'm going to say cohort, but DAX cohort heard of it.

1:24

I have.It's a classic bioethics case.Classic.And it just happens to be in Texas as well.So let me set the stage. 1973 July summer vacation.Dex, whose name is Actual actually Donnie and his mom refers to him as Donnie during the during some of the the quotes that we'll talk about.

1:45

But the world knows him as Dax.OK, so he's described as a a very fit, athletic captain, the football team, goes off to college, kind of likes to party, likes to be kind of a a guy who is living life to his fullest in his mid 20s.

2:02

I think that's important.So listeners, sort of keep that in the back of your mind, because I and I always joke about it with my class when I show some of the videos, which we'll post on the website, I'm sure.But the way in which the narrator will always cast Donnie Dax as, like, handsome and fit and captain of the football team, this is really important to the narrative of what's going to happen to him at for reasons I, I want to explore as you get into the case.

2:30

Right.And it's fascinating to me how often the characters in some of these big cases get get reduced into a couple of kind of stereotypes.Like for example, we in a different episode this season, we talked about Buck versus Bell which was the case Supreme Court case where a woman who had maybe, maybe not had intellectual disabilities was described in the same way.

2:52

Right.And Dax is always described as like this fit robust Texan ladies man is often referred to.There's this kind of funny anecdote that's shared about him volunteering or working as bus driver when he was at University of Texas in Austin in order for him to meet and make friends with drunk women as he was driving them back home.

3:15

After I have never heard that.That's funny and and slightly creepy, but.Yeah, funny, creepy.Anyway, so Dax, this robust young man is working for the summer in and around an area that has a propane pipeline that's running through Texas.

3:32

I think there's probably more than one propane natural gas running through Texas.So he's out there and he's actually out there with his dad doing some work or doing some work around the area and there's a massive explosion.And Exxon, the the oil company is the owner operator of this pipeline that explodes.

3:51

An explosion is huge.Not just in and around Donnie where where where he was standing when it exploded, but also all the way down the pipeline.So it's like almost like a mile long explosion.This pipe exploding.Dax is there and sustains third degree burns to his face, to his hands, to the majority of his body.

4:12

His dad was also very severely burned as well and ends up dying from his from his injuries.After the explosion, neighbors people who are who are nearby rushed to the to the scene and find Dax.They're burned, very significantly burned and according to many, many reports, the first thing that he asks or that he says to this farmer who is always described as a farmer who shows up is him asking for a firearm, asking for a gun, He says the quote that he says, can't you see that I'm a dead man, I'm going to die anyway.

4:47

Is the the quote that is he reportedly said to the fire the the farmer who was the first one on the scene.The farmer did not give him a firearm and this began a journey of Dax cohort in the medical system as he is being treated for these very extensive, very painful burns over the next several months, years into the rest of his life.

5:10

And he is consistent in one thing throughout and that is that he does not want to be treated.He doesn't want people to touch him, he doesn't want medical treatment.He just wants to be allowed to die.Yeah, And is this presumably because he's in so much pain?

5:25

Yeah, So he talks about the pain, just absolutely excruciating descriptions of what it was like to undergo the treatment for the burns.So the debridement, which is a fancy name for basically just like scrubbing the dirt out of wounds.

5:41

Also, the skin grafts are very painful.Every changing bandages, everything about treating somebody with significant, significant burns is really, really painful.And I'm sure that's still true.I remember in the one of the documentaries about him, they had him being dunked into like bleach baths, which also just and I don't think that's something we do anymore, but I can't really imagine anything more painful than that.

6:09

Yeah, yeah.Some of the later videos of him talking about what it was like he he uses the phrase it feel, it felt like I was being peeled alive or skinned alive every time that they would remove a bandage which is actually what they were doing, right.

6:24

So taking, taking dead, dying skin off of him.Putting new skin on and wounds and it's it's it's one of the most horribly painful treatments that I think we can go through as as people.This case is, I mean, it's like really hard to both talk about and to even harder, I suppose, to see in the various documentaries when I took a class in College in by on bioethics from Jim Childress, who's a very famous founder of bioethics.

6:53

You took a classroom gym show?I did.Yeah.Oh, that's cool.Yeah, I remember it.It was a very, very big class.And every Friday we would watch a documentary about, you know, something in bioethics.And I remember every Friday being like, oh, we get to watch a movie.

7:10

And then at the end of the quote, UN quote movie being so sad and and thinking, actually, I don't think I wanted to watch that movie because there they were always really tough cases.And I remember this one in particular being just really, really tough.

7:26

It's often hard to imagine exactly what the lived experience is, right?And one of the benefits of this case or the material that that surrounds this case is that Dax, over the course of his life, was very consistent and very articulate in his descriptions of what he was thinking at the time, but also kind of what the experience was moving forward.

7:47

So, all right, So after the explosion, he and his dad were first taken to the nearest hospital, about 10-10 miles away.But they didn't have a sophisticated burn unit.So he and his dad were both transferred to the burn unit of Parkland Hospital, which is in Dallas, TX.

8:05

As he was transferred to Dallas, Dax's father, who was also significantly burned, passed away actually in route.And so, when Dax Gets There, admitted to Parkland Hospital's burn unit, his mother was asked to consent to all of the treatment forms that he was in order to facilitate his treatment.

8:25

Sure, which would have been appropriate.That's my question.Is that the first bioethics question?Yeah, sure.That's the first one.So Dax did not sign any of his consent treatment forms, was not asked for his consent, and actually very vocally and consistently said no, don't treat me.

8:44

So how?How did we get here?I mean people like to say oh it's you know this is before informed consent was the thing that it now is.I'm not sure that's exactly true.I'm I think we were asking for informed consent.The standards might have been slightly different but we were certainly not not asking for informed consent before the mid 1970s.

9:03

My question would be, and I this is probably contested, is what his decisional capacity was at that time.So surely when he got brought to the Ed, even if he was saying don't treat me, don't treat me the and I might, at least he might have been in so much pain that he didn't have decisional capacity, meaning he wasn't in his right now.

9:24

Now we would have some sort of standard of decision making capacity.We'd ask some questions.But in emergency situations we often don't.We often just treat even over objection.Sometimes if we think the person is in such peril and in such pain that they couldn't possibly like, be of sound mind.

9:42

It's a legal term that I'm sure you can define.I can't.Nobody can define sound mind.It's a joke because I've tried and there's, yeah, nothing in the law that will define that term.But you can at least imagine initially he's in so much pain that he probably doesn't have decisional capacity.

9:59

By the time we're getting to like a transfer to another unit or another hospital.That's a question I would have is, does he have decisional capacity?Can he accurately say where he is, who he is, what the treatment will do for him, what the alternatives to the treatment are, what it would mean to not be treated?

10:18

And does he really understand all of that and can he articulate it?I mean, I got to imagine he's still in such excruciating pain that any kind of conversation like that might be difficult.Yeah.And his ability to so anybody's ability to provide consent is really dependent upon the context.

10:38

So what's going on with them personally with their, with their illness, with their injuries, but also kind of what decision is being asked of them.So is this a really mundane decision and basically everybody's going to consent to it like getting your blood pressure read for example.

10:53

We we don't often ask for specific informed consent for kind of routine treatment type stuff.But when you're looking at very invasive, potentially very burdensome, very painful treatments, not only do is it good ethics to have the patient involved, but also like we're not sure we have permission to do these painful things to this individual without them agreeing to it.

11:21

Right.Unless they are not capacitated to make those decisions.And really, Yeah.So the state and the stakes are really high, which both makes us like want to have them involved because it's that's happening to them, but also means that they need to have a kind of assurance.

11:39

I want an assurance of capacity to make sure that he's not saying no and we're allowing him to die with him not really understanding kind of what we're asking of him.Yeah.Because like you said, the consequences are so significant.I mean there's.He's going to die, right?Or potentially, he could die without treatment.

11:56

So later the Doctor Who admitted him into Parkland, one of his first doctors there that we have records of is named Baxter Charles Baxter and he was asked later why Dax's mom signed for Dax when he was admitted.The rationale that he gave, according to reports, is that Dax's hands were too burnt for him to actually sign the form.

12:17

Nope.That's Nope.So that's not an indication of mental capacity or decision making capacity.You can give oral directives and somebody can witness that.You did that, I mean it.Anyway, that no, your hands not working is not the same thing as not having decision making capacity.

12:36

Right.And it's required, it's incumbent, it's an obligation of healthcare providers to assess the capacity of all of their patients.And sometimes those are really easy assessments when you walk into the room and somebody's floridly, psychotic or unconscious, like it's not a sophisticated and involved examination that you have to do.

12:56

But when there's kind of Gray areas or there's disagreement or there's ambiguity, you know, making a formal assessment of whether somebody is in the right mind to make their own medical decisions is really, really important.Really, really important.Not surprised it didn't happen then, because it rarely happens now.

13:14

My assessment of, and maybe others will disagree, is this happens all the time that I get an ethics consult and we're reviewing the case And I ask, so does this patient have decision making capacity and no one's done a capacity assessment?They've either assumed something based on really vague criteria or they'll say, Oh yeah, they're oriented times 3, which is not the same thing as a decision making capacity assessment.

13:39

So they're using the wrong criteria.So sometimes you hear that truncated or or abbreviated in the healthcare system to AO times 4, AO times 3, which means alert and oriented to four generally general questions, right.

13:55

So do you know your name?Do you know who what day it is?Do you know where you are?Those types of questions my my advisor or my my mentor.When I was doing my clinical ethics fellowship he would always say AO times 4 does not decision capacity make.It doesn't even rhyme.

14:11

It doesn't rhyme, but it when you say it in a in a thick enough Scottish brogue, then everything kind of rhymes, right?So Dax during this time repeatedly asks for his treatment to stop, and sometimes he is very thoughtful and careful and deliberate about the way he's expressing those preferences.

14:29

Sometimes he is just very forcefully arguing and obstructing and and trying to prevent these things to be happen happen to him.Doctor Baxter later as he was asked to kind of recall the this case or what was going on during this time with Dax.

14:48

He said that he didn't believe that Dax had the decision making capacity to make the decision at that time because he was in so much pain and because he was on narcotics.Oh, OK.Well, so at least had some of the same concerns I would, although it doesn't sound like he actually did a capacity assessment.

15:04

He just sort of assumed and you know what they say.Yeah, I've, I've heard what they say.I think also it's interesting that we, I don't know how to say this.And so the the times in which we have to make some of these really important decisions are times in which we are not at our best, right.

15:25

So these emergency type of really monumental decisions don't happen when we have an opportunity to thoughtfully reflect upon them or you know, weigh weigh the the pros and cons or the harms and benefits against each other and try to come to a decision that aligns with my values right.

15:42

Sometimes we have to make really time and place decisions, but this was not a a discreet time and place where this was happening.This was over a number of weeks, a number of months that DAX was consistently asking to stop the treatment and stop the treatment, which I can only imagine for the healthcare providers, the nurses and and the techs and stuff who are actually doing this to him.

16:04

That had to have been excruciating.As it should be.I mean I can't even imagine treating somebody over objection is always difficult.Always treating somebody over objection when the treatment itself is excruciating.Much, much worse.

16:21

Treating somebody over objection when their objection is consistent.And maybe we'll want to talk about whether it's rational or not, but at least there are reasons for it making it much, much harder.I can only imagine how tough this was on folks giving him direct care every day.

16:37

There's one interesting report that I'm just going to read the the encounter of where they were trying to place a feeding tube through a a nasal gastric feeding tube.So through the nose, down into into the the stomach to provide him additional calories to help him gain or maintain weight.

16:54

And the doctors didn't again didn't ask for Dax's participation, kind of went ahead and did this without asking him and and Dax was resistant to it.He said that he the the tube came came out through his mouth so it was misplaced and he bit down on it and wouldn't let go it as a form of rebellion or a form of resistance to this thing that was happening to him that he didn't want.

17:18

And the Doctor Who was doing it got became very frustrated and end up storming out of the room.But later it's interesting that Dax said that he was able to forgive or his parents or his mother who is making these decisions for him at this time despite him being 25 years old and despite him being able to make his own decisions probably and all the doctors and nurses who did that.

17:41

He said the only person he didn't wasn't able to forgive with this was this doctor, because he felt like the doctor was doing something harmful to him on purpose and maliciously so that he wasn't being patient, which is interesting.Yeah, that is interesting.My question Tyler on this is, well, I have two questions.

18:01

The 1st is how do you feel about.So even if the his decision making capacity is somewhat vague or at least let's just assume that the doctors have reason to doubt that he can make his own decisions, might his consistency and his refusal be taken as a pretty strong preference that ought to be honored?

18:22

So, so might we honor his preference even if he doesn't have decision making capacity?So that's one question.And the second question is at what point is the treatment life saving versus body preserving?Because if the question is, is this going to save your life and I don't want my life to be saved, that's one kind of question.

18:44

But at some point, presumably he's not going to die of this anymore of these injuries.But if we don't treat him, he will live with a lot more pain and a lot more injury than he would if he were to receive the treatment.

19:03

Yeah.So the first question, well actually let's let's talk about the second question.It was, is it life prolonging, life saving anymore or is it body preserving, functional preserve, function preserving, maybe it's a different way of describing it.Yeah, it's the later.

19:19

So one thing I love about this case is after all of this kind of happened, the Dax cohort is has lots of video recordings and able to articulate kind of his thoughts again through all of this.And he said that the the moment when a nurse who was helping treat him through all of his burn stuff told him, he said this was kind of, in a, in a moment of frustration, said, you know what, you're going to live anyway.

19:47

And so if you just cooperate, it's gonna make your life a little bit better.And that's when he said that he realized that okay my opportunity, for lack of a better term, for my life to end because of this is kind of past and now we're into the stage of.OK, how do we make the best of out of a bad situation?

20:05

And he said that's when he started to like re engage fully full full wholeheartedly with the rehabilitation and with the treatment and stopped resisting.So I think that that was an interesting moment for for him is thinking about, OK, my life is no longer in danger.This is what my life is going to be like.

20:22

Do I want to continue to resist or maybe there's a different way.Wait, what was your first question again?Oh, so the first question is as a as a clinical ethicist, how do you feel about if you had a patient like this whose decision making capacity was perhaps being assessed as not there or on the cusp, but he is consistent in his refusal of treatment.

20:48

Might you take that preference?We wouldn't call it, you know, an informed consent process, but you might say it's a strong preference from a potentially incapacitated patient.Would you at any point say that's enough of a a strong, consistent preference to honor it versus somebody who might just say, well, he doesn't have decision making capacity, so we're going to ignore everything that he says in favor of treatment?

21:13

Yeah.So just ignoring him because he's deemed to lack decision making capacity I think happens a lot, but I don't, I don't think that's the best.I think that's the wrong answer.Doing a thoughtful capacity assessment and coming to the conclusion that he lacks decision making capacity for this decision at this time is is 1 type of analysis or one type of conclusion to come to.

21:39

But that doesn't lead us directly into the the the presumption that everything that he has said about medical care, how he's lived his life, all of his wishes and goals and values and preferences are all also out the window, right?That's also the wrong answer.

21:54

And so as a if if I were to approach a case similar to this as a clinical ethicist and I'm trying to give recommendations to folks who are making these types of hard decisions, one way of presenting that is OK, he is not the person who, let's assume that he does not have capacity.

22:14

If he doesn't have the capacity to make his own decisions, then what that means is he doesn't have the legal power to switch that light switch on or off anymore.It doesn't.It doesn't say anything about whether he prefers the light on or off or dimmed or or or some other lighting system at all.

22:30

It just means that he doesn't have the legal power of flipping that switch.And so we need to get someone in that position to flip that switch.So a legally authorized decision maker could be somebody who is named in an advance directive to make decisions on your behalf.It could be a close family member.

22:47

Generally we we look in orders of closeness, relational closeness.So spouses are generally first and then adult children and then parents and then adult siblings kind of moving outward in concentric circles of intimacy with the patient.And that's not just out of convenience in my opinion.

23:04

That is because we want the patient's voice to be the the voice that we hear, the voice that's directing the treatment.And we assume for really good reasons, that the closer you are to an individual, the better able you you're able to speak with their voice.The the way that I would recommend that his preferences be taken into account is that whoever is making those decisions has to take into account his preferences and if his preference.

23:27

And if we don't know exactly what his preferences are in this particular situation, for example, I can imagine that his mom, Dax's mom, and he and his father had never talked about what his preferences would be if he was very, very significantly burned and injured and needed long term lifelong treatment and care after that.

23:48

So taking into consideration what other people's preferences are, one aspect is, is this a consistent is it is it a persistent preference?Is it a preference that regardless of time, place that this individual has articulated this over and over and over again And although it doesn't answer the question, doesn't finally answer the question, it gives us a lot of information upon which we can make a lot better informed decision about what this patient may or may not want.

24:17

I think that's a really nice way of articulating it.It's a strong piece of evidence in absence of other kinds of evidence because even if advanced directives had been more prevalent in this time period, what 25 year old is filling out an advanced directive anticipating that they would have burns all over their body and would have to make treatment decisions based on that.

24:38

It's just something that nobody expects to happen.And even if you did, even if you could anticipate such a life, how can you even possibly imagined what that kind of life would be like or what that treatment would really entail?It's a difficult thing to predict ahead of time.

24:54

One thing that makes it even more difficult to predict what people would value or what their what their preferences would be as they're looking forward to a life of lifelong treatment or or disability of of some description.

25:10

It's really hard for people to imagine what living with those disabilities is like, right?It's like a failure of imagination.Absolutely.And there's really good empirical evidence for this that people really under predict how high their quality of life will be in a disabled state.

25:25

So most people would say I would never want to be disabled, I'd rather be dead.And yet, most disabled people don't feel that way if they experience like this.A kind of trauma that leaves them disabled is that they actually do value their lives and will rate their quality of life about the same as people without disabilities.

25:45

So there's good reason to think that people are pretty bad at predicting what it's like to live with a disability, which makes advance directives really complicated.Maybe something for another episode, but it makes me nervous about some people's advance directives.And and part part of the thing that makes it difficult especially we're thinking about imagining a life of with limited abilities in some way that all of our biases and and stuff creep into that.

26:11

And we start to presume that people who live live lives that that entailed limitations on their physical movement.That we we presume, I think incorrectly, that those are really hard, difficult lives and and nobody would ever be happy living like that, which isn't the case, right?

26:27

It's just not there's there's good empirical evidence to tell us that that's not true.Over the next several months Dax is in A1 rehabilitation center and then he gets transferred to a different one in in Galveston.And like everybody who has massive, not everybody, but it's really common to have really bad infections with your your skin being so compromised and going through all these treatments.

26:52

And he continue.He suffers a couple of setbacks with with his recovery and rehabilitation, and he describes that 10 months as being forcibly tortured by the medical system.That's terrible.During this time, like I said, he continues to say I don't want this, I don't want this.

27:09

Please stop.Please stop.Psychiatry gets involved and there's actually a psychiatry doc note documented that he does have decision making capacity, but everyone just keeps ignoring.It.Oh no.So why?Also, what do we know about his mom?

27:27

As a mother, I can imagine having a very strong bias to want to keep my son alive at all costs, which may or may not align with his own desires.Right.So his mom is the one who's making decisions.

27:44

And even though Psychiatry said, you know, Dax has the mental capacity to make his own decision, it's like a wholesale ignoring of that.So he is not able to stop the treatment.He's he's very limitedly involved in the decision making and his mom is the one who is making a lot of decisions and like like you said, a mother's love for their child to live, particularly after this terrible accident that took the life of her spouse.

28:11

I mean it's we can all see us making similar decisions.So is she a good surrogate for his desires?That's a great question.What depends on what you mean by a good surrogate.So I think I mean something like we expect or what I will tell next of kin who are making medical decisions is your job or obligation is to speak as if you were the patient, to speak as if you were your son.

28:41

If your son could tell us what he wants and this might take some imagination on your part because maybe we don't, you know, well at this point he's capacity.So we'll just kind of put that to the side because obviously then they should have been listening to him and not her, but let's say he wasn't.

28:58

We ask of these surrogates to make substituted judgments, speak as if you were this person.We're asking you because, like you said earlier, we think you know this person well.You're close to this person.You are better than we are, at least at predicting what it is they would say if they could speak for themselves right now, that is your job.

29:18

Your job is not to make decisions for them that you think are right.It's to make decisions they would have made.That's the gold standard.And so, like, I agree, and a good surrogate is someone who doesn't even have to articulate that.That's the standard by which they're making decisions, but they have to make decisions in that way.

29:37

So this this brings up another question.What if you just simply don't know what the decisions would be?How?How do you make a decision in that way?Yeah.So in that case, we use a different standard, a best interest standard, which would just ask you to make decisions that are in their best, in that person's best interest.

29:54

And you know that's not as necessarily clear cut as we would like it to be, but decisions that preserve their life without burdensome treatment.I mean it it gets really complicated in the case like this because I want to save his life or I can imagine wanting that and at the same time recognizing the incredible burdensomeness of the treatment that is preserving his life.

30:19

And so I think that would be, you'd have to really weigh kind of risks and benefits of treatment and that and that's kind of the standard you'd have to use if he had never been able to make decisions for himself, which of course very young children or people who've never had decision making capacity, that's what we would need to do for them.

30:36

But we would have some.I I hope at 25 you have some indication of the kind of person that Dax is and what he enjoyed and what his goals were and if he'd be able to meet those goals given this life that he's now in.In situations where we don't know what the patient would have wanted, when we're working under what we call the best interest standard of medical decision making, there's a lot of ambiguity.

30:59

There's a lot of flexibility and autonomy given to the surrogate to tell us what what they would have wanted and what the patient would have wanted in that situation.But it's not.It's not unfettered.It's not without limitations.Like, you have to be able to tell us a story that makes sense about why your decision aligns with what this patient would or wouldn't want.

31:17

And so in this situation, we had a patient who is capable of making his own decisions, at least according to the documented psychiatry notes at the time.And the the patient's mother was able to make decisions.And she's described as someone who is very religiously conservative, that she identifies herself as being a a devout Christian.

31:38

And she believed that continuing treatment would have been immoral in the eyes of God.And if God wanted Dax to die, he would have already had died.And so she said, quote, had I believed it was in God's will for him to go and die, I think he would have.

31:53

I could have accepted that.But that wasn't God's will after he is going through this treatment and and like I said, the one of the nurses kind of was able to get through to him and able to convince him to start participating in his in his treatment and to stop resisting because he would like was going to live anyway.

32:13

That didn't answer all the questions for for Dax in his mind about whether he wanted to live like this, and there are at least 2 reports of attempted suicide afterwards.Yeah, so he really consistent in his desire not to live like this.And Despite that, the medical staff proceeded with the treatments and continued to ignore his request to leave and to stop.

32:34

Ultimately he did consent to and participated in the treatment and he was very clear that it's not because he ever changed his mind.It's because that he had the understanding that if he was going to have any type of quality of life that he had to participate and preserve that for the future.

32:54

And so that's what he did.So after he got out of the hospital, he was, he was blind.He was mostly unable to hear, he'd lost all, but I think he describes one bit of a thumb.So all of his hands, he'd lost fingers because of the fires and he was listening to.

33:11

And this is kind of a funny, an interesting, funny anecdote he tells later.So as he was in this period after being in the hospital, learning to live with these new limitations and pain and treatments and kind of the reorientation of what his whole life was going to be, he was listening to audiobooks, as we all do, and heard a story about a Supreme Court Justice who was blind and who was actually able to, despite being blind, was able to be on the Supreme Court.

33:43

And it inspired him to pursue going into law school, trying to follow in those footsteps.He was inspired by that story.So he goes to law school as every good as every good man will.OK.That's right.So, yeah, so he goes to law school and had a very difficult time in law school.

34:03

He a lot of the accessibility things that we have in higher education or all education now as far as like people helping to take notes or audio versions of material and all of those things that would help somebody with disabilities be successful were not in place or at least not available to him.

34:21

And so he said that he would sit in class where he would have a hard time hearing, couldn't see anything, and just try to memorize everything that came out of the the words of the professor's mouth and took him several years to graduate from law school.Ended up graduating in 1986 from Texas Tech Law School and went on to get married and to start a career practicing law.

34:45

Specifically advocating on behalf of patients and folks who were injured.So tort law, personal injury, that type of.I was just thinking, I mean, that's incredible.And thinking about the IDEA Act, which helped to make education more accessible to people, that's that dates back to is it 1975?

35:10

So this would have already been in place.Law school is maybe not the place that this transferred to, but wouldn't he have had?I'm a little surprised that he didn't have more access to disability accommodations in law school.Yeah, there's not a lot of material talking about like what he was able to do and not do.

35:30

And part of it I think was what was available at that school at that time.And maybe he was the first person who was blind and hearing impaired that was trying to.And so it doesn't, he doesn't ever reflect upon it as malicious or or anything like that.But but he did recognize that it was a significant barrier to him, you know, passing, getting through law school quickly and as with his peers.

35:55

But it was He was eventually successful and eventually able to develop a practice specializing in advocating for people who were injured.So that's incredible.So he goes to law school, finishes law school, and then what?So he practiced.

36:11

He got married, He was practicing law.He got connected with a group that specializes in trial, trial law.And so he got connected with some individuals, a guy named Rex Houston.He's kind of a really famous Texas plaintiff's attorney, and he was a bit of a mentor for Dax.

36:32

And and Dax ends up practicing and working and teaching a little bit.He talks about later being involved with the medical school, giving lectures to medical students and law students at at University of Texas Medical Branch in Galveston, as well as around Houston and kind of the the greater Texas area.

36:52

Rex Houston has got to be the most Texas name I've ever heard.Yeah, and I think that his personality was as Texan as you can possibly as imagine as.Well.What questions do you have?So when you bring this up in your classes, what what are some things that you want your students to to think about or to reflect on?

37:11

Good.So this is often cast as a informed consent case, which that element is certainly there.So what are the elements of informed consent?Who can give informed consent?Which inevitably leads to the questions we've already had around decision making capacity.

37:27

So how do you assess it?When does a person have it?What do you do if it's in question?So that's kind of the the big a big question that comes up.And then I think pain treatment in general, pain is one of those things that we just feel like we have to mitigate and that we've gotten I think better at.

37:45

I think burn care is still really tough, but I do think there's been advances in the way we treat pain positively.So that's another kind of question of like how do we treat this person's pain?What would be, how much can we and how many narcotics could we give before they become unconscious?

38:05

And if that were to happen, is that OK?So there's questions around like how much pain treatment we're allowed to give that has changed and constricted after the opioid epidemic.So this has become a huge issue once again is can we adequately treat pain before people start getting too nervous about over treatment, disability rights and and like we said, the imagination of living with a disability.

38:30

That for me is a big one because he's still and he just passed away so which is is quite sad.So he lived, but he lived a long life and by all means of a kind of flourishing life.So married, had children, had a law practice.

38:46

These are all things that most people would think we're good and he would say we're goods in his life.He always contended that they should not have treated him and that's tough.That's tough to reconcile.Yeah, it would be a different case if after the end, he was grateful for the sacrifices of everybody and not listening to his, you know, his, his desires at that time and persevering and grit and kind of overcoming a Hallmark type of Hallmark movie type of ending to the story.

39:15

But so he went on and said something.So here's a quote from from Dax.I'm enjoying life now and it feels good to be alive.I still feel that it was wrong to force me to undergo what I had to do to be alive to make this clear.

39:32

If the same thing were to occur tomorrow, knowing that I would reach this point, I would still not want to be forced to undergo the pain and agony that I had to undergo to be alive now.I would want that choice to lie entirely with myself and no others.That is powerful and complicated.

39:50

But I I think I get it because I think sometimes my students will say, well then why didn't he, you know, just finish his suicide or why, you know, that can't possibly be true.If he's happy with his life, how can he possibly say that he wouldn't have wanted to be treated.But you know, he's talking about then it was wrong.

40:08

What they did and what I had to undergo was so terrible that even though I don't want to end my life now, even though I think my life is good, it was so wrong to do what they did.They should have never done it.I think that is it's not inconsistent.

40:23

I think it's a powerful stance.Yeah, not inconsistent, but definitely nuanced and and like you said, it's complicated.There's there's layers there.I think I began to to wrap my head around his position best when I heard him talking about his mom and he said that he never had animosity towards his mom.

40:42

He understood why she made those decisions, but he thinks that she was wrong.And he said that, you know, people that we love and respect and and people that we forgive can do things wrong to us.And we can still recognize that it was a wrong thing to have been done.But we can still love them and respect them and and have them part of our lives moving forward.

41:01

It's not required that if someone does something wrong, even something that's wrong that hurts you, that you carry that, that hatred, that anger with you forward, which is I think it's really inspirational.Yeah.Is there anything else, Any other kind of ethics questions that come up for you when you talk about this case?

41:20

Sometimes the the question about whether there is, whether it's the same morally or ethically, it's the same thing to not give treatment and to withhold treatment, right?So this idea of withholding and withdrawing treatment, are those actually the same thing?

41:37

Do they have the same moral value?If I am making a decision to stop somebody's treatment, is that the same type of decision as to not start the treatment?Sometimes those questions comes up and those are super interesting to me too, because I think that in bioethics we have a an answer to that question which I don't know is completely satisfying.

41:57

Well, what we often will say is, in theory, withholding and withdrawing are the same moral act.In practice, it's much more difficult to withdraw treatment than it is to withhold it, And it's emotionally more difficult for for physicians and nurses to take something away that they've previously given it.

42:18

It feels more like they're the actors in ending a person's life.And that can also be true of family members and surrogates.They can feel more like it's their action that is leading to death.So I think it's just emotionally more difficult.Yeah.

42:35

And maybe, maybe it's not Even so clear theoretically, but that is kind of our stance and it it's a convenient one insofar as a lot of times my recommendation as a clinical ethicist will be to do a time trial.So let's see if the treatment works, let's give it a couple of weeks and if it doesn't seem to be working, then we'll withdraw it.

42:53

And that can only happen if we think that it's not wrong to withdraw versus withhold.Like we don't have to make the decision right now.We can try it and see if it works and it will be the same morally as not providing it now.Yeah it's it gets to be complicated really, really quickly and it's really hard when we're we're in a situation where we have a patient who is actively refusing or actively resisting something and we're we're trying to provide or the the the healthcare team is trying to provide that.

43:27

So lots of lots of layers, lots of questions about this case.But it's a it's a really, I think, a really vivid illustration of ways in which surrogate decision maker or making medical decisions on behalf of somebody else can be really complicated and and get really messy really quickly.

43:48

Well, thanks for presenting, Dex.Thanks for listening to this episode of Bioethics for the People.We can't do this podcast by ourselves.We've tried and it's not pretty.Our team includes our research interns, Michaela Kim, Madison Foley and Macy Hutto.Special thanks to Helen Webster for social media and production support.

44:05

Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two, and husband to one.Podcast art was created by Darian Golden Stall.You can find more of her work at Darian Golden stall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.

44:25

We love to connect with our listeners.All of our episodes can be found wherever you listen to podcasts.Please like, subscribe and share and connect on social media.

In this episode, Devan and Tyler discuss the separation surgery of conjoined twins, Mary and Jodie.

Transcript

0:03 

Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics.And he's Tyler Gibb, who, according to his students, is best described as the goat of bioethics Tyler. 

0:28 

So I have a good case for us today.Awesome.I love these case discussions, especially because we tend to pick cases that the other person doesn't know as well.So it's like you're teaching me.That's right.That's the whole that's the whole point, right, is that we're doing some good teaching here.OK.Before I start this one off, I want to say most of the cases that we do in this series are going to be ground breaking cases that probably most people in bioethics at least have heard of. 

0:53 

This one I think is a little bit more marginal, but I want to include it both because I think it's a really interesting case and you know, it's our podcast and we get to decide which cases we talk about.Yeah, things are interesting if we decide they're interesting.That's right.We are the arbiter of interesting.The case did make headlines. 

1:11 

It was all over the news in 2000.We were, of course, in 2000.Kids at heart.But the year 2000?In the year 2000.Yeah, I may have been in college, so. 

1:26 

But we were not bioethicists yet, so it might not have made our radar, but it was really big news.So this case at least was big news at the time, even if it doesn't necessarily always get included in like case books about ground breaking bioethics cases.But but maybe it should.OK, the case is of Mary and Jody. 

1:45 

Have you heard of them?No, not the case of Mary and Jody.OK, good.So it'll be all new to you.Have you heard of the concept of sacrifice surgeries?Sacrifice surgeries.I don't think that I am familiar with that term. 

2:03 

It can I guess what it is.Sure.Is it a a surgery that you are undergoing in order to benefit somebody else?Yes.OK, Yep.So, like, I'm donating an organ for somebody.Would that be a sacrifice surgery?It would not under this, it would be more like you donating your heart. 

2:24 

Oh, my whole heart.You're making the ultimate sacrifice.OK, wait, was there a Will Smith movie about this?Yeah, that 11 pounds, 7 lbs, whatever the weight, whatever the weight of your organs is.I already forgot.No, I mean, I guess that could be one too. 

2:40 

Normally we would say we would never do this.We don't kill one individual to save the life of another individual, which is not something that we do unless the individuals in question are conjoined.Oh, OK All right. 

2:56 

I'm seeing the wrinkle now.Yeah, these are very rare cases, but I think that they're they're worthy of note.I think sometimes there's this idea in bioethics that we focus too much on exceptional cases and not enough on the more mundane cases that we actually will encounter in our everyday work. 

3:12 

And that's true.We do tend to focus on the more salacious because it's just more interesting and more out of the norm.And I think that would be true of this case, except that I think it raises really important philosophical questions about what it means to be a person, what it means to kill. 

3:29 

These are like really important things that we should have worked out in bioethics, and I don't know that we totally have.So this case kind of presses us to think really deeply about some fundamental questions and we'll get we'll get to those at the all.Right, but I'm with you.OK, I'm going to set the scene so it is April 2000 and a 35 year old woman goes to get a prenatal check up in her home and her home is in Malta. 

3:53 

Have you heard of Malta?Malta the country.Yeah.Yeah, I've never been there.But yeah, it's like, yeah, Mediterranean.I'm thinking it's beautiful, right?Yeah, it's an island that is owned by the UK but has its own cultural history there and it's very Catholic. 

4:08 

And so she gets, she goes to her checkup and this is the four month ultrasound.So women who have had children are familiar with this.This is a pretty important ultrasound because you start to see anatomy in a kind of forming in a particular way, and her OBGYN realizes that it looks like she has twins that are conjoined. 

4:28 

When he sees this, he transfers her to Saint Mary's Hospital in Manchester, England, where he previously practiced.It's where he came from.And he said, right now I'm not equipped to handle this.You need to go somewhere to a better facility that can handle what what's about to happen.So I would imagine that being having conjoined fetuses is like an immediate, you know, high risk pregnancy like you know you want some place that does like maternal fetal medicine, like high level of medical care and attention is necessary when we got conjoined situation right. 

4:57 

Exactly.OK, Yeah.So that's what he's thinking.Would you venture to guess how rare conjoined twins are?Oh, I mean, we hear about him a lot, but I think it's probably like a a salaciousness bias in the media, right. 

5:13 

So I would say it's probably really uncommon.One out of 10,000 is my guess.Yeah.It's more like 1 out of 50 or 60,000, OK.Wow.Exceptionally rare, and in doing some research on this case, we still don't exactly know why conjoined twins become conjoined. 

5:30 

Which is Isn't that mind blowing?Like we have some hypothesis about why this happens, but we don't know for sure.Yeah, that is weird, I thought.I guess my assumption would be that it was some sort of malfunction in like the division process like early in the embryonic stage, but I'd have no idea. 

5:47 

Yeah, I mean, that makes sense.It's like a fission or a fusion problem.But we don't totally know.And sort of when I was digging into this, it was like, well, we have some theories, but they don't seem to explain all the ways in which conjoined twins become conjoined.For whatever reason, we don't totally understand it.And because it's so incredibly rare, it's really hard to research. 

6:05 

OK, so we do know.Really rare.There's various theories, Don't know exactly why.We know that most conjoined twins are stillborn, so most don't make it for whatever is going on.It doesn't often end in a viable pregnancy. 75% of conjoined twins just don't make it. 

6:24 

Even though they're exceptionally rare to happen, they're even it's even more rare for them to be born alive.When they are born alive, they're often female, and the hypothesis there is that female fetuses are just a little bit more hearty.Did you know this?Female fetuses tend to be a little bit more robust, a little heavier in weight, just for whatever reason. 

6:42 

I had no idea that that was a OK statistic that was known.OK.Oh yeah, everybody knows that, Tyler.I mean, I appreciate that women are stronger, more robust, more, all of those, all of those things.Well, I mean it it.Yeah.So it doesn't, like, translate into other things, but it's just true. 

7:00 

Of fetus is for some reason, the twins we're going to talk about today are female.Mary and Jody are pseudonyms for these girls.We do this often.It becomes a court case, and we'll talk about why in a second.But in court cases and in bioethics cases, we try to use pseudonyms for, especially for minors who don't have a say, whether their names are released. 

7:20 

Their names subsequently have been discovered, but I still feel like and I'd be curious how you feel about this, they didn't agree to have their names revealed, and as far as I know, even as adults that's not true.I'm going to stick with Mary and Jodi.Yeah, it makes sense to me.I mean, these kids had, you know, no ability to be involved in the decision to in the public eye. 

7:38 

So, right.Yeah, full support, Mary and Jodi.Mary and Jodi, most conjoined twins, are joined at the chest and they share at least one organ.OK.Mary and Jodi are actually conjoined at the base of their spine, and they're facing away from one another, if you can kind of picture that. 

7:55 

Yeah, they share an aorta, A bladder and a circulatory system.OK.Which makes sense, yeah.After a few scans, they realize that Mary is a smaller twin, and it seems like she's not doing as well in utero as Jody. 

8:11 

OK, and the doctors are pretty scared that these twins are not going to be born alive, that they might imperil the life of their mother.So they actually urge their mother to terminate the pregnancy.This would not be uncommon, both for the sake of her and and because they don't think that the children will do well. 

8:31 

Rita, their mother, says no.She is Roman Catholic and she thinks abortion of any kind is wrong.She really wants to give the twins a chance.So she says absolutely not going to terminate this pregnancy.I want to see it through. 

8:46 

I'm going to send you Tyler, what the management plan is from her OBGYN and I just am curious how you feel about this.OK, so let me pull it up.So how how far along in the pregnancy are we still talking?Is this still like the, I don't know, like 20 weeks Ish? 

9:03 

Yeah, yeah, yeah.So this is a note from the the Doctor.Yeah, this is her OBGYN, OK?So do you want me to read it?OK, I've had many discussions with the parents about their wishes for their children.I have at all times tried to accommodate their wishes within what I believe to be ethical and acceptable guidelines. 

9:24 

So far so good.As a result of their desire for non intervention, which I think I wish we should flag as a potentially loaded term, I took the unusual step of allowing the twin pregnancy to continue until she went into spontaneous labor at 42 weeks, about 9 1/2 months. 

9:42 

Normally one considers delivery before that time because of a concern about whether the placenta can adequately nourish both fetuses.Also, as agreed with them, I delivered them by cesarean section at the last possible moment in labor. 

9:58 

This met their desire that the pregnancy was as non interventionist as possible.OK.All right.How do you feel about that?So if I were to recap, so it sounds like the doctor just disagreeing about the plan to to just allow the pregnancy to continue. 

10:18 

Obviously when he says things, it looks like saying things.I don't know some of this.The language is a little bit weird, so I took the unusual step of allowing the pregnant, the twin pregnancy, to continue.That's AI don't know. 

10:33 

I don't feel great about that language and probably what it implies about the conversations that happened.Yeah, like.Like, it's his decision.Yeah, like he is magnanimously allowing this mother to make a decision.So that kind of rubs the wrong way.Waiting to the last possible moment isn't really a medical term. 

10:53 

I think this is a quote to the media, so maybe he's trying to say things in a way that OK, people understand.Yeah, but still it's kind of centering the doctor in a weird way.Non interventionist is a fun term as well.Yeah.So it's, I mean if I were to recap, it's like they allowed the, the pregnancy continued, they were giving supportive care and as long as possible in order to give the fetuses as much time in utero as possible to develop and give the best possible outcome, right. 

11:20 

So it's kind of a watchful waiting type of approach.Exactly.We know already that any sort of twins tend to be a little bit smaller.The pregnancy is a little more precarious because of twinning.It's even more so with conjoined twins.I think what he means he took the unfortunate, sort of, like you said, centering himself. 

11:38 

I took the unusual step of allowing the this to continue.Probably what he should have said was it's very unusual for a parent to choose to continue on the vast majority of cases in which conjoined twins are diagnosed in utero.The parent would probably choose to terminate.I think he's more trying to say, like it's unusual what we decided to do. 

11:57 

And he just kind of phrased it in a maybe not the best way, but.Maybe a clumsy way?Maybe a slightly clumsy way.That's right.So 42 weeks.So they let this pregnancy go on for a really long time. 42 weeks is is beyond what we would typically it's within the of acceptable care, but they're trying to give these kids a chance. 

12:15 

Yeah, I mean 42 weeks, that's a late delivery even on in the best of terms, right.Right.I mean, 40 weeks is what you go for.Full term, yeah.And really, like going beyond 40 is precarious for mother and often because the if the fetus gets really big, that can be dangerous to her. 

12:33 

But of course, because they're conjoined in, because they're so small, that might be what's best to give these children the best shot at life.If they were to induce earlier, they wouldn't be as big.Maybe that would be more precarious for them.This mother is putting herself in jeopardy by allowing this pregnancy to go on as long as it did. 

12:49 

So they wait till spontaneous labor at 42 weeks and then deliver via cesarean.It's kind of wild to me to think that any woman ever delivered conjoined twins vaginally.But of course we know this is true because there have been conjoined twins historically before Caesarean was invented. 

13:04 

Yeah, it can happen.I I can't imagine that happening today without some sort of, like emergency situation.Not, not the planned delivery mechanism for conjoined twinning.Right.No.Caesarean makes more sense for most of the ways in which conjoined twins are conjoined. 

13:20 

OK, the medical team proceeds with the anticipated plan.They deliver Mary and Jody Caesarean section August 8th, 2000.It's pretty clear her on delivery that Mary is not doing as well as Jodi.So it looks like she has an underdeveloped brain and lungs and heart, and that Jodi seems fairly typical of a newborn. 

13:39 

So there's a discrepancy between their anatomy and like I said, so each of these infants has her own set of organs.But it looks like, and we can see this because they share a circulatory system, that Mary's heart and lungs are only functioning because they're being supported by Jodi's heart and lungs. 

13:56 

So Jodi's doing a lot of work in her lungs and heart to circulate blood for the both of them.Right.Which may be long term.Prognosis isn't great for viability of both of them, right?That's right.The worry is that this is so taxing for Jodi. 

14:12 

It's so taxing on her heart and lungs to be supporting another person that they're worried that it'll over tax her and that she could die within six months.And if she dies, Mary dies.Her continuing to support Mary could lead to both of their deaths within and, they're guessing somewhere between three and six months. 

14:32 

OK.Because the and and if I'm just guessing here the because as they grow and develop the taxation or the need of 1 circulatory system to continue to maintain, the other one is just going to get more and more and more it's going to be more taxing and OK that makes sense. 

14:49 

What do you do?All right.This is, this is the conundrum and maybe our listeners think, oh, it's really obvious what you do, but I don't know that it is really obvious what you do.The the physician team comes up with three options.Can you potentially guess what those options are? 

15:06 

So one option would be to, let's say, watch fully, wait again, which is one of my preferred interventions.Just wait and see how things go.Maybe that the prognosis is wrong and you know, Mary starts to catch up and pull her own weight cardiovascularly and they're able to live conjoined and and both be relatively healthy. 

15:31 

I think another option would be to surgically separate the two and prioritize one of the children over the other one.In that case, they would prioritize Jodi at the sacrifice of Mary.And then I don't know the third option, I don't know what's the third one. 

15:48 

I guess what you tell me.Those are all wrong.No, no, not quite.Just a little tweak.So one would be let them be, and if they die, they die.We're just gonna not intervene.This is what would happen in a sort of natural environment. 

16:05 

We just let them be and they will probably both die.But maybe we're wrong.They seem fairly certain.So one is to just do nothing, not nothing, but not try to intervene surgically.You would still try to care for them in other ways.The second choice would be a, this is the quote UN quote sacrifice surgery where you would separate them. 

16:25 

And it's funny you say prioritize.I I've talked to we have a friend, a mutual friend who has actually participated in some conjoined twin separation surgeries and what he has said is that you it's unethical to try to prioritize one or the other that you try to do your best to separate them in a equal way. 

16:44 

What's difficult about this is even if you do that because they're not sharing major organs, we just know that Mary won't survive the surgery because of her the under development of her brain and lungs and heart.They just don't think there's any way she could support her own system if she were separated. 

17:01 

OK.Sacrifice in that we know that Mary dying from this surgery, either immediately in surgery or quickly after would be almost 100%.They just don't think there's any way she could survive this surgery.But the odds of Jodi dying in surgery or soon after are like 5% OK. 

17:19 

So, so relatively low, right?Relatively low, yeah.The third option, then, would be wait until Mary dies and immediately separate them and hope that Jodi survives that surgery.OK, they they guess. 

17:35 

And these are all I will say, the more I read stats on this stuff, the more it's like these are pretty.These are guesses.I mean, they're informed, educated guesses.But because conjoined twins are so rare, it's really hard to know exactly what percentages are.But they what they're going to say is something like if if we choose option three, we wait for Mary to die and then do an emergency separation surgery, Jodi's chances of dying in surgery are more like 60%. 

18:02 

OK, so way more risky to Jodi, but OK, so why is option 3 on the table then?If it's.I don't know.I guess that's the first question that jumps to my mind is by waiting you're increasing the risk to Jodi it must it. 

18:21 

So waiting must have some sort of other benefit to in order to make it make sense, right?Well.Kind of.Or avoid some sort of harm that we're trying to avoid.Yeah, well, I think the harm is the feeling by some that a separation surgery would be killing Mary, OK? 

18:40 

And so waiting for her to die naturally, even if it imperils Jodi's life, is the more ethical thing to do if you believe that separating them, which we know would lead to Mary's death, is a form of killing Mary.And this is the controversy. 

18:56 

Yeah.So then if we think that the separation surgery of option #2, so the the separation now option would be killing Mary, then we would wait until Mary died naturally and then try to save Jody. 

19:11 

OK, I'm with you.OK, and it also might have to do with just how the parents are feeling about this.Mary and Jodi's parents don't want to separate them at all at all.They say from from their position as strong Catholics that both of the their daughters have a right to life. 

19:28 

That they would feel with option.The second option, that it would be killing Mary to save Jodi and that that for them is ethically wrong.And they even go so far as to say like this would be against God's will.OK.They also, and I think this gets sort of overlooked, said some things about how difficult it would be to raise a disabled child in Malta, that Malta is a very discriminatory place toward people with disabilities, that they would be judged as having sinned for creating a disabled child. 

19:59 

So there's also those kinds of worries.And so they're leaning toward option one is just, you know, leave them as they are.This is how God created them.If they die, that is what was meant to happen.The physician team is not happy with this option, right?There's a chance of at least saving Jodi. 

20:16 

They're not happy to just let them both die because they think that there's something they can do.This happens in the UK, not America.What do you think would the if if this had happened here in the States?What do you think would have been the ethical deliberation about this?Yeah. 

20:32 

If this would have happened at our hospital, I would assume that I would hope that there would be some a lot of conversation way before the delivery, right.So these options are not suddenly created just because of the delivery, right.These these are conversations that could have, should have been been started as soon as we had the diagnosis of conjoined twins and hopefully working through the various options even before we we had the children born. 

21:01 

I think would be the first step in Michigan where where I am and you know Texas, California, where wherever else.I think that it's almost ubiquitous, almost 100% that there are mechanisms by which a physician who is being asked to do something that they believe to be medically inappropriate or medically futile, which is the term we try to stray away from a little bit, but that they are able to say no if they're being asked to do something that they believe to be violating their their oaths or good medicine. 

21:32 

The opposite is sometimes true.Depending on this, the policies and state laws that we can compel treatment against the wishes of people who are refusing it.Those circumstances are much more narrow and really kind of tightly controlled about when we can compel treatment against somebody's wishes and those generally have to be really kind of slam dunk cases, right. 

21:54 

It has to be clearly beneficial.The parents refusal or surrogate decision maker, whoever that may be, decision has to be clearly kind of outside the bounds of what what what is reasonable, but I don't know that this case rises to that level.I don't think it does. 

22:09 

Yeah.So my gut would say and and I don't have a comparable case in the States to to show you, but sometimes we call this like the zone of parental discretion.So there's a lot parents are able to say yes or no to most things.And like you said, there's these two extremes 1. 

22:24 

Extreme is futility or non beneficial treatment in which the parent is requesting some sort of treatment that we just don't think there's any physiological way it would work.That's one outlier and the other outlier is the parents are neglecting to provide some sort of life saving, low risk intervention. 

22:43 

The classic case of this is a blood transfusion.If a parent is refusing a blood transfusion that would be life saving for a child.We can often overrule them because the risk of a of a blood transfusion is very minimal.It's it doesn't create a lot of harm or a lot of risk and the benefit is extremely high. 

23:01 

If you need a blood transfusion, it's a life saving, it's often a life saving blood transfusion.So those are the kind of outlier cases where we'd say no, you can't make this decision it it's like abuse or neglect, it might rise to that level to say we can't do it.I don't. 

23:16 

I don't know that this case is quite so clear.If in America, especially in 2000, we would have just let the parents decide, even if that meant both children died.Yeah, I I.Think so, especially at that time.So there are there have been cases in the last several years of it usually has to go through the judicial process. 

23:35 

So judicial system at some point but judges have compelled treatment of like for example chemotherapy in certain types of cancer.So there's always this push to say where does this zone of parental discretion, where are the limits to it. 

23:50 

Blood transfusion like you said is a classic example because not only is it really low risk and really high benefit, but it's a one time intervention.We can do it.Kid either gets, kid gets better, they move on with their lives and live a happy normal life.It causes pause when the outcome is going to be long term care, long term like repeated interventions over and over and over again or the child is going to have long term impairments on you know, their life function and health and stuff like that. 

24:21 

So my gut reaction would be to be similar to yours that I think that in 2000 given this set of circumstances letting the parents make that decision even though the healthcare providers are really against it.I think that that's kind of how it would play out. 

24:37 

I wonder if maybe it would.And I'm going to suspend judgment on that for a second, just to say I think that's descriptively what would have happened.I'm not saying that's the right or wrong decision, but but of course this didn't happen America, This happened in England.And as you may know, in general, I think in England they're much more interventionist. 

24:54 

They're much quicker to go to court and overrule parents.And we saw this with like the Charlie Guard case, which we may talk about in another episode.But I also don't think the Charlie Guard case would have happened the way it did in America.Yeah, there's sort of a more interventionist, more legal interventions within a lot of these cases. 

25:11 

So the medical team brings us to court, 'cause they say we can't, we can't just let this happen.Which of the other?Two options does.Is the medical team pushing for?They're push pushing.For the sacrifice surgery.Just the sacrifice surgery, the number 2.The we go in, we, we have the surgery and OK, got it. 

25:29 

Yeah, yeah.So the.Family wants option #1, which is no intervention.The medical team wants option #2.Nobody seems to be advocating for 33 Okay.They bring it to court.A UK court overrules the parents refusal to permit the separation of the girls now, so there's a bunch of judges that give reasons why they are allowing that this refusal of care couldn't be overridden by the medical team. 

25:53 

So I want to send you this too, just 'cause I think some of these are like incredible and pretty contrived.I want to be gentle just because I think it it's so hard to make good analogies to conjoined twins, because what else is like being conjoined?Maybe mother and baby in utero 'cause there's conjoined us there. 

26:10 

But even that's a little different.So this, there's just such unusual cases.So the judges, I think, are grasping for some good analogies such that we can draw upon the law to make a convincing argument.Yeah, which is.The way that a lot of, especially in novel cases that that's what, you know, judicial reasoning or jurisprudence, I mean that's what we do is we say this case is more like that one that we decided in this way. 

26:34 

So let's try to find you know, is it enough similar that we can follow the same type of process reasoning by analogy?Or so I want to.Throughout, there's like a few different analogies that different judges use.And actually it was also appealed.It went to the high Lords and they also permitted the surgery. 

26:51 

But here's so I'm going to give you a smattering.The first was one of the justices Justice Ward argued Jodi was entitled to self-defense against her sister.Oh, interesting.OK.How do you feel about that?So they're talking about the.Interests of Jodi the Twin versus the versus their their twins almost like like Mary is AI mean parasite. 

27:13 

Seems like a two hearts of a word but but a person who is drawing the resources or consuming the resources that rightfully belong to Jodi?She's a a net drag on her right to life, basically, yeah.And I don't know that I've heard in this case the word parasite, but actually physicians used to use the term parasitic twin to describe a twin like Mary. 

27:36 

But we, we do not use that term anymore.It's like really degrading.Yeah, yeah.It gave me the, it gave me the shudders when I said it.So yeah, let's go back and strike that from, OK.OK, so the first claim is self-defense. self-defense?This person is like draining my life energy. 

27:51 

She's going to kill me.I have to be able to defend myself against her.This would be sort of like a justified killing.Interesting.So, So what?That does.And so I'll just kind of think through these out loud as we go through them.But that is saying that that's conceding that it's, it's it would be killing Mary, but it's saying that it's a justifiable killing because you know if it's a proportional reaction to the threat to life against Jodi, OK, OK. 

28:17 

So that's one.Kind of argument.Here's one on the opposite end of the spectrum.Justice Johnson argues that Jodi is serving as a kind of life support system for Mary, which should be able to be withdrawn to allow Mary to die.Interesting. 

28:32 

So almost that Jodi's body, her circulatory system that's supporting is a medical intervention that just falls under the same analogies of a ventilator or dialysis or you know, an external cardiac supports bypass system. 

28:48 

Yeah, but that's what's interesting about that one is that who is turning, who is being turned off and.Right.So if Jodi was actually the the life support system, she's not being turned off.Right.Right.It's the it's the the other party in this that's being terminated anyway. 

29:05 

Interesting.OK, that one to me is like a.Real stretch analogy.Like I get why it is.It is the case that, like Jodi is helping to support the life system of her sister.But to call her an artificial life support when they are both human beings, Yeah, Just feels really icky to me. 

29:21 

Yeah, external.Like, yeah, I mean, there's a lot of other words besides artificial that seem to make more sense, but right, but you.Can see why you do you want to make that argument?Because we generally do agree that it is OK to turn off an artificial life support system to allow somebody to die naturally. 

29:38 

So if you, you know, you can see why you'd want to make that argument.But I think ultimately it's a dehumanizing kind of argument, OK?He also argues separation is in the best interest of both girls because Mary would be better off dead.That can join to Jodi.Oh man. 

29:53 

That's a that's an uphill battle.That's an uphill argument.I mean, I I there are situations where I I have seen where where the dying process is horrific and being dead is preferable to that.But I come up from a very a particular set of, you know, backgrounds and biases and somebody who has the opinion that all life is sacred, that being dead is better than being alive is. 

30:21 

I mean it's almost like a it's a non starter, right?Like what?It's bad.Especially if we have somebody who is disabled and as this same judge conceded, depended upon the other person to be to have any life, right?OK. 

30:37 

Doesn't sit well, OK?Justice Walker argues that the surgery, the sacrifice surgery, actually grants Mary bodily integrity as a human being, albeit in death.OK.Implying in some way that bodily integrity and dignity is not present now. 

30:54 

It can only be awarded to her through the surgery.All right.OK.Being a singlet, you have bodily integrity, but if you are conjoined, you cannot.And it's just as a reminder there are adult conjoined twins.There are people who live a long life in a conjoined state. 

31:11 

How insulting to them that they don't.So the claim is they don't have bodily integrity.Yeah, but.And not only so bodily.So integrity is an interesting word.Like, I mean independence, autonomy, like, I mean there there's a lot of different ways that you could kind of frame the idea of the benefit of being separated, I think, without using dignity language, but that's what. 

31:34 

He chose, though.OK, oh, here.So I take back the the parasite comment.Lord Justice Ward has this quote.Though Mary has a right to life, she has little right to be alive.She is alive because and only because, to put it bluntly but nonetheless accurately, she sucks the lifeblood of Jodi, and her parasitic living will soon cause Jodi to cease living. 

32:01 

I don't like that one either.No, not.Not great.Wait, what?What?Is Yeah.How do you understand the difference between a right to life but not a right to live?She has a right.To life, but not but little right to be alive, little right to.Be alive. 

32:17 

All right.Maybe I'm just not smart enough to understand the difference that's being drawn there.How do you understand that?I think he's just.He's drawing on the sort of, like, parasite notion that so she has a right to life, just as Jodi has a right to life.But her living is so conditioned on Jodi, and her living is so conditioned on, like Jodi eventually, like, overtaxing her body. 

32:38 

OK, yeah.But it's it's a weird this is not how normal people would talk.Yeah.Yeah.Yeah, OK.OK.So those are kind of a smattering.Do you like any of those is no or is there a better analogy?What analogy would you want to use, Tyler, I don't know.I mean what's interesting about this kind of this, like you said, the smattering of justifications is that they all seem to have the conclusion in mind and they're trying to trying to kind of after the fact or post talk, make a justification about it, but like how they're trying to justify a conclusion that they've already made. 

33:12 

I think the analogy of, I don't know, maybe being pregnant would be more useful than obviously more useful than the parasite analogy or the life support system or the self-defense.I yeah, I think there's a couple of other benefits to comparing it to being pregnant because you have mutual duties and I don't know, I'm. 

33:33 

I'm drawing a blank.How about, I mean what are what are some better ones?I don't know that there are.Better ones I.And I think it's because it's such, it's so unique.It's just there's not anything quite like being dependent so physically on another person.I mean, even a mother child relationship has a slight difference there. 

33:51 

Yeah.Yeah.There's the possibility of independent life in which you know both have the opportunity to flourish.But this situation is 1 is the flourishing of both is kind of mutually exclusive because of the dependence of of one on the other.So but this isn't even the a case where it's like this the twins are in like even more they don't share vital organs. 

34:14 

I mean obviously bladder and circulatory system, but it's not like they they're conjoined to the point that they have one heart, one lungs, right.So you're not having to.Choose who gets what organ, Which is right.Yeah, would be more maybe intolerable to think about, but they're not even having to do that. 

34:30 

So it's it's such a unique situation.I mean, I think like if you were going to do like a Catholic bioethics take on this and you didn't agree with direct abortion, you're talking about indirect abortion as the kind of analogy it would be that.So sometimes abortion is tolerated when the there's an intervention using the rule of double effect that you're trying to save a mother's life and in so doing, the fetus is terminated. 

34:54 

But that wasn't the intent of, say, the operation.So if a woman has cancer in her uterus and you're trying to remove it and as a consequence the fetus dies, that can still be tolerated within Catholic bioethics because the goal was not to terminate.But I don't know that that works in this case.You really are you're not intending married to die, but you just you just know that that has to. 

35:13 

The only way for Jody to live is to be separated, and to be separated is to lead to Mary's death.And so I'm not sure that that kind of indirectness applies here.Yeah, I'm not sure it.Answers the question, yeah, that we have right.So in reviewing.This case, there was a lot of bioethics commentary at the time, but I think George Annis, do you know him? 

35:31 

I know of.Yeah.Yeah, we.I know of him, yeah.He's a very.Famous legal and lioethicist.So, you know, just like you there.Material differences, but go on.So he has this great quote, or I think it's a great quote.He he writes in the case of Mary and Jodi, it seems to have been decided not on the basis of law, which most of the judges found to be of little help. 

35:53 

So, Right.So their analogies are really strange, but on an intuitive judgment that the state of being a conjoined twin is a disease, and that separation is the indicated treatment, at least if such treatment affords one of the twins a chance to live.I feel like that's kind of what you were saying. 

36:09 

Yeah.Is that how you feel?Yeah.Yeah.I think George is saying the same thing as me.Yeah.Yeah.No.Which draws raises some other interesting questions about like how we define disease, which is something that we having some interesting conversations with some of my colleagues about disease. 

36:27 

Like how how are we defining disease because we can't accurately or at least satisfactorily define disease.What are we treating?Like what what, what interventions make sense?Or, you know, if disease is inequitably distributed within our society, how do we grapple with that if we don't agree with what a disease is? 

36:47 

So do you think that conjointedness is a disease?I do not you.Don't, OK.Not on the face.Of it, OK.I mean, I think it would be and and because I'm writing about this case in some similar cases, I think that would be inadequate.I think it you might compare it to something more like a disability, because the ways in which conjoined twins move through the world, like the world is not built for conjoined edness. 

37:11 

It's built for singlets.And so you would face some real social obstacles, but that doesn't necessarily mean that, like, your life is poor for being conjoined.It just happens that in this case of conjoinment, there is a problem, a medical problem for sure, or a health problem.So there's lots of disabilities that might have additional comorbidities that are associated with the particular disability, but it's not the disability itself that's the disease. 

37:35 

It's those other processes that are going on.So I do want to make that separation, so to speak.Yeah.So, so, Mary.'S fundamental problem is not that she's conjoined, it's that she has an inadequate aort or bladder, whatever the consequences of the conjointedness are right, I think so. 

37:51 

That's.What I would want to say okay various bioethicists, like I said, weigh in.Most of them argue something like better to intervene and save one of the girls than to passively let them both die.That's the kind of general consensus from what I can see from the time. 

38:08 

And there are a few who think, oh, they should have intervened.But when they argue that, they argue mostly like it was the parents prerogative to make that decision and they shouldn't have overruled the parents.So those are the kinds of arguments happening on the other side.There is some strong voices in the Catholic Church who are coming to the court arguing against what is happening on slightly different grounds. 

38:30 

So the Archbishop of Westminster, Cormac Murphy O'Connor, which is just the most sort of perfect name, say, say.His name again?Cormac.Murphy O'Connor sounds Irish.Maybe, Yeah.No.So he writes a statement to the UK judges arguing against separation surgery. 

38:49 

And here are his five moral considerations.I just think we might go a little over our typical time, but I think they're interesting.So, one, We have a duty not to aim to cause an innocent person's death.OK thou.Shalt not kill.Yep, especially.An innocent person? 

39:05 

Yep.And there's nothing more innocent than a newborn child.Yeah, two.Bodily integrity shouldn't be violated without benefit to the individual.So he's actually arguing opposite of the judges, that it would be a violation of Mary's bodily integrity to separate her from Jodi.OK, three, the good end of saving Jodi cannot be justified by killing Mary, so the ends don't justify the means. 4 The burdens of surgery were extraordinary and therefore did not carry any moral obligation. 

39:34 

OK, so separation surgeries are extraordinary and we are therefore not obligated to perform them.And five, the parents are acting toward what they think is owed to their children and should not be overridden.So we we should give deference.So kind of a.Kind of parents rights type. 

39:51 

In situations of ambiguity or Gray area, then we should defer to the person who bears the burden, which is the parents right, whose obligation it is to make that decision.OK, so those are his. 5 Arguments and And there are other Catholic bioethicists who agree with him and some who disagree with him. 

40:10 

Just to say, I think that those are potentially more interesting arguments than like parasite artificial life support.Yeah, I was just.Going to say that, I mean if we're if we're laying like the the complexity and nuance and probably the the usefulness of those analogies or those moral principles against the ones that the judges came up with, like I think that the the Archbishop makes a. 

40:31 

Better case, Yeah, the Archbishop.Of Westminster is maybe a little bit better able to make those claims.So the other argument.That I see a bunch of bioethicists making with and and even Catholic ones is really interesting.That support the idea that conjoinment itself is bad.Conjoinment itself impedes the girls, is flourishing, and the goodness that comes from life. 

40:50 

Things like bodily distinctiveness, like marriage, being conjoined, will severely diminish the goodness of their lives because they can't do things like get married, it seems kind of.Reductionistic.Incredibly.And because lots of conjoined twins have gotten married, well, conjoined Chang and Eng Bunker. 

41:12 

Do you know the the these are the famous twins.It's like like.From the 1800s, Right.Like one of the first ones.Yeah.So they.They're really famous because they came from Siam to America to be part of a traveling freak show.Like another topic that we should totally do an episode on.But they had, they both got married and they had a combined 21 children. 

41:32 

What?They did not.Impede their being conjoined did not impede their flourishing it seems really at all.I mean that's that's supposing.That having 21 children is an element of flourishing, which I think that we could probably have a difference of opinions on.Great point.Yeah. 

41:48 

Actually side note that those twins are actually where the, the term Siamese twins comes from, right.Yeah.And I think in.In 2000, you'll see a lot of the that phrase Siamese twins, but just to say it's pretty anachronistic and we don't use it anymore, right?Yeah.Yeah.For good reason. 

42:04 

Yeah, I think so.Like they sort of set the stage to calling all conjoined twins Siamese, which is very weird.But physicians, I'll see physicians using the term.And I just, I'm shocked by that.Conjoined is the better term.Yep, we find that in these discussions, there's these assumptions about conjoined twins. 

42:20 

There are two people always that they both want to live.This makes sense.They would prefer to be separated and that the real only medical challenge is like how best to separate them.So there's this instinctive like it's bad to be conjoined.We make this argument on behalf of children. 

42:35 

They would want, if they could tell us in their future adult selves what they would want, they would definitely want to be separated.These are empirical questions, I think, that don't bear out.So there's been some kind of investigation of these claims and and you find and again conjoined twins are really rare. 

42:52 

And to find narratives from conjoined twins is pretty rare too.But all of the modern narratives of conjoined twins almost exclusively will say it is better that we're conjoined.We would not want to be separated.We think our lives are good, which, like, really flies in the face of this assumption by most bioethicists that separation is the best thing possible. 

43:11 

You know it.Reminds me of a of children who are born kind of intersect or sex or that the gut reaction is we have to pick one and we have to do the surgery and we have to assign a gender and we have to you know with the assault underlying assumption that to be not abnormal is the wrong word. 

43:28 

But to be out of the the standard cookie cutter black and white is so bad that even if we're introducing all these other harms and traumas and all these other issues by assigning sex, that that's ultimately the good thing, right?Which is an assumption that demands justification that doesn't exist. 

43:46 

I think agreed these.Cases are actually quite similar for just the reason you're naming is that there's this assumption that there is like one kind of life that is better.And it is true that we've built a whole system that supports that idea because it's really hard to be non binary to have a child who you don't immediately gender. 

44:04 

What do you read on the birth certificate?You know, there's all sorts of like, legal pressures to to make these choices.We know that of conjoined twins.How do you think about a driver's license?Where do they go to college?Like, do you admit one or, you know, there's all these interesting questions that the world is not ready for certain kinds of bodies. 

44:20 

What if one?Wants to get married and the other one doesn't want to get married or right?What does that?Look like one wants.To drink alcohol and the other doesn't want to drink alcohol, but you know the systems are such that you know you can not drink and still get a little buzz from your from your sibling potentially.Right.Yeah.Yeah. 

44:36 

So there's, I mean both like physiological, like how how does that work, but then also social, like how does it work in the social world?I think we are moving in a different way.There's not an urgency in some of these cases.Maybe we can decide later.This case is more urgent though because of the situation of impairment of of one life and then both lives. 

44:55 

So there is more urgency to this question just to kind of reveal the ending.They separate them.Mary immediately dies and Jody, as far as they know, is still alive.Interesting.So Can you imagine like being a family on the wall and maybe not even fly on the wall, but a bedside nurse, a surgical scrub nurse who is Wheeling these conjoined children away from this mother who knows that you're taking them away to to for one of them to die right against their wishes? 

45:23 

I think it'd be obviously a much different situation if the parents were on board and they said if God allows her Mary to live after the separation and you know that's something that will accept and if not then we'll accept that as well.But then just saying no, don't do that, don't, don't do that thing that's going to end up with the the death of my child. 

45:42 

It's terrible for the parents.But also I I think of the the supporting members of the the healthcare team that I bet, I bet there's some some secondary long term trauma that were associated with that situation as well, yes.I I'm sure in the time that that was incredibly difficult to do. 

46:00 

If it's any consolation, I don't think that like what ended up happening justifies necessarily the decision that was made.But I think the parents did say they were glad that decision was taken out of their hands and they're glad that they were separated because they love and and you can.What else would you say?I mean you have this child that you love you're not going to say gosh I wish she had just died. 

46:19 

Of course not.You know by taking the decision away from them.I don't want to say, like, that's better for them ultimately, but maybe that's of some consolation.Yeah, it.Probably.I mean, what it does is it allows them to kind of offload that guilt if somebody else made that decision and they were not not the actor but also kind of the victims in this as well that the the healthcare system and the judicial system said that this is going to happen. 

46:43 

And they advocated as strongly as they can.I've seen that in some cases where we take, you know, there's a medical decision usually in the context of like your futility or inappropriate treatment or code status, for example, Where if we say that this decision is medically incoherent and we're not going to do this or we're going to do XY and Z and the parents or the surrogate decision makers that that decision is taken out of their hands, then there is some relief I think. 

47:09 

So I think that's the case.I think for me, sort of as I indicated at the beginning, there are like big questions that this case raises for me.The first one is, what does it mean to be an individual?Because again, I think there's this assumption that you cannot be an an individual with your own bodily integrity if you're conjoined, and we love individualism in America. 

47:28 

Can you be an individual if you're conjoined?What would that mean?Does it depend on how conjoined you are?Right.Yeah.If you're just a little bit conjoined versus if you share vital organs like the the degree of conjoined edness, I guess, yeah. 

47:45 

And I would think most, most conjoined twins, you ask, we'll say that they are individuals.They have different preferences, that they, you know, like different things, that they have their own personalities.In fact, it's actually really important to a lot of conjoined twins to emphasize how they really do have different personalities, probably because people assume that they, because they have to do everything together, that they must like the same things. 

48:07 

Maybe we overemphasize our own bodliness in our individuality.What makes a life good?There's this real, overriding presumption that conjointedness would make your life bad, that it would prevent your flourishing.I don't know that that bears out in reality.But, you know, what is it about?Like?Is it just that I can go to the bathroom without somebody being there all the time? 

48:25 

Like, is that what makes my life good, or is that, like, a bare minimum?I have little children right now, so that almost never happens.It's so.Basically, it's like having a parasite on your hip all the time, children.Right, children.Yep.What counts as killing?This is a huge question. 

48:41 

Is it?Is it killing?And if it is killing, is it a justified killing?But I think that these, these physicians didn't want to admit that this was killing.Yeah.Maybe that has to do with the discomfort, I think, the appropriate common discomfort of of trying to parse through the differences of the types of killing, right. 

49:00 

So we think of homicide as being this broad category.And then there's acceptable types of homicide.And then there's bad homicide, right?There's murder, premeditated murder.But there's also, like involuntary manslaughter, for example, has a different moral weight and a different punishment attached to it. 

49:16 

And then there's even more acceptable types of killing, like killing in the context of a military conflict or self-defense, like we talked about earlier.And.It matters to parse it, yes.These parsings. 

49:31 

Matter.Because killing someone in self-defense is not the same thing as thinking about it and planning it and executing it.These carry different moral weights.But what if it's not killing at all?What if you know, what if it is more like life support?And that's the better analogy.And so we we are pretty clear in bioethics that withdrawing medical interventions that are not working or that we agree are too burdensome. 

49:52 

That's not killing.That's allowing somebody to unnaturally by removing the intervention that was keeping them artificially alive.And it's important to us to to separate that from killing.Yeah, and and.Not just morally, like, criminally speaking, right?Right, there's.Criminal. 

50:08 

Consequences.Not just, you know, moral consequences, But if.You think genuinely like this Is that the case of Mary and Jody, and these sacrifice surgeries are a case of killing.You then have to justify why that's OK and even the next step of, like, how it's OK to override parents to make that decision. 

50:28 

So this really presses up against the zone of parental discretion, I think.Yeah 'cause this is not a.A question of whether or not my 17 year old should or does have access to contraception for example, like this is, this is a isn't just like a lifestyle question or a question of differences of religious commitments or political persuasions or whatever, any other category other than life and death, right. 

50:52 

So the we are literally talking about the the death of a child.That doesn't have to happen today, right.And I think that's kind of what you're talking about earlier is the urgency of these questions.There may be a day where it has to happen, but that day is not today and we have some time for deliberation and thought and maybe maybe negotiation or compromise. 

51:10 

It doesn't seem like the right terminology, but at least some dialogue and some conversation about how we we weigh these these issues of individuality and killing and bodily autonomy.And yeah, these are they're.Huge questions. 

51:25 

And I I love this case because, I mean, it's a very sad case, but it's just such a case to prompt us to think a little bit deeper about what we mean by certain terms.And I'm not sure all bioethics cases do that.Some of them sort of set precedent like this is how we're going to behave in the future.Now that we have the precedent. 

51:41 

This case, I think just prompts us to go how sometimes we really sidestep some very fundamental questions in bioethics that this case is going to force us to reconcile.And I think we.Sidestep not because it makes sense to sidestep.We sidestep because we probably don't have the tools or the sophistication to really work through those in a way that is satisfactory to people or we just. 

52:03 

Don't agree, right?So we can often sidestep these questions because they don't matter as much in most cases.But in this case, if you really think that this is killing and that it's OK to be conjoined and that this is just sort of nature taking its course, man, that's a real different orientation than than what the medical team took. 

52:19 

And I'm not saying I don't.I think it was the wrong decision.Gosh, I can't imagine any other decision really.But Wolf, it's a tough one.Well, that's a.That's a great case for this series on profoundly important cases in bioethics, so thanks, Ellie. 

52:35 

Thanks for listening to this episode of Bioethics for the People.We can't do this podcast by ourselves.We've tried, and it's not pretty.Our team includes our research interns Michaela Kim, Madison Foley and Macy Hutto.Special thanks to Helen Webster for social media and production support. 

52:51 

Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two and husband to one.Podcast art was created by Darien Goldenstall.You can find more of her work at dariengoldenstall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com. 

53:11 

We love to connect with our listeners.All of our episodes can be found wherever you listen to podcasts.Please like, subscribe and share and connect on social media. 

In this episode, Devan and Tyler discuss the case of Ashley X. Ashley’s parents and medical team proposed a treatment plan to attenuate Ashley’s growth that drew both praise and criticism from bioethicists.

Links to Sources:

Kristi Kirschner et al. (2009) “The Curious Case of Ashley X,” PM&R.

Ashley’s Parent’s Blog: http://www.pillowangel.org/

News reports:

• https://www.cnn.com/2007/HEALTH/01/11/ashley.ethicist/index.html

• https://www.nytimes.com/2007/01/26/opinion/26singer.html

• https://www.theguardian.com/society/2012/mar/16/ashley-treatment-ericas-story

Transcript

0:03

Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics.And he's Tyler Gibb, who, according to his students, is best described as the goat of bioethics.

0:28

All right, Tyler, I'm excited for our case today.Yeah, this is a I'm, I'm excited.This is a good one that I don't know much about.So I'm expecting some insights, some some brilliant stuff.OK, so lower your expectations.

0:44

So I was thinking about this case yesterday because I actually teach on this case a lot.And I think I teach on it a lot because for me, this case has everything.And I as soon as I thought of it that way, I I was reminded of the Do you ever watch Saturday Night Live?

1:01

Yeah.Do you know the the Bill Hader sketch was Stefan?Oh, I love Stefan.Stefan and he's like, this club has everything, yeah.And then it's a, then it's a list of, like absolute debauchery.Yeah, so this case has everything.

1:18

OK, Not quite as wild as Stefan's stuff, but this case has.What does it mean to be part of an Ethics Committee?What does an Ethics Committee even do?What is the purpose of medicine?What should medicine say yes to?What should it say no to?

1:34

What is the body for?Is the body something we can infinitely change to suit our desires or the desires of other people?Or does it have a kind of internal integrity that shouldn't be violated?What are children for?Why do people have children, and what are the rights of parents to control the bodies of their children?

1:54

What does it mean to be a person?Are there certain kinds of disabilities that render somebody less of a person or less worthy of the respect and dignity we owe to other people?And what does it mean to have a quality of life like?How do we rate that for another person?

2:11

So just a couple kind of big questions and bioethics.Goodness, it's almost like a like an exam question where if it wasn't real, you wouldn't you.You wouldn't imagine that all of these different issues were all wrapped up into the same case.Yeah, so I'll say this case, unlike maybe some of the other cases we'll do this season, it's not as if this happens all the time.

2:32

It's a pretty rare case, although it we'll get into how often we think that this happens now.But I think it's not so much, you know, a paradigmatic case of like things that ethicists always have to deal with, but rather the kind of case that's going to bring up all sorts of really important bioethics questions that I think presses us to really get our term straight, presses us to think about, you know, individual bodies in certain ways.

2:59

So for me, it's more of a case that brings out and and it's why I teach on it a lot is because I think it brings out these big kind of overarching questions that we should be asking in bioethics, or at least that when I teach bioethics, these are the questions that I center all of my course around.

3:15

So for that, it's a really good case and it's just like I think it's a case that if you work in bioethics, you've probably heard of, but it's not probably one that most people have heard of.OK, OK.All right.So, so what's the case?This is the case.

3:31

Wait, you you told me to lower my expectations and my expectations could not be higher.OK, well, I hope to meet them then, so I'll try to be as enthusiastic as I can.This is the case of Ashley X.Ashley X OK, I've heard of this.OK, so Ashley X, obviously not her name.

3:49

This is a pseudonym given to her by her doctors that were treating her when they published about the case.X obviously stands for a last name that we don't know.We do know her name now because her parents have blogged about her for a very long time.

4:06

You can check out more about this case on their blog, which is pillow angels.org.We'll talk a little bit about that name, maybe in a second.So whereas some of our other cases have made it to the courts, this is not a court case.But it became a wildly debated case in bioethics and in the media because of some of the backlash that the doctors and ethicists got when people heard about the case.

4:29

So that's why it became famous.This is unusual also because an Ethics Committee and an ethicist were actually involved instead of being like boy, I wonder what would happen if an ethicist would have gotten their hands on this earlier, right?Right.And so the ethicist has written about it too.And this is the late 90s.So to sort of set the stage, ethics committees had been in development.

4:48

In a another episode, we're going to talk about kind of the case that prompted hospitals to start hiring ethicists or to start or maybe not hiring ethicists but to form ethics committees.So this probably would have predated like somebody being paid specifically, like Tyler gets paid to do clinical ethics.

5:05

That's how he makes all of his millions of dollars, obviously.Yeah, that, that and this podcast.Right, right.The two things that obviously are making us a ton of money that we do for free.So there are ethics committees, but there's not a ton in the late 90s.It's going to start ramping up right around this time between the late 90s and 2000s.

5:24

You're going to see it exponential growth.My husband hates when I use that word because it actually has a meaning that we never are using correctly.Massive growth, Lots of growth in ethics committees.I appreciate your husband because he's a he's a math guy, right?

5:40

At his heart so.It's like you're not using exponential, right?I'm like, OK, I think we just mean a lot of growth.So there's going to be a lot of growth in ethics committees right around this time.So this is one of those hospitals that just happens to have a really high functioning Ethics Committee right when the case comes up.And it's it's a big part of why this becomes popular.

5:57

Setting the stage, Ashley X is born in 1997 in Seattle, WA.All right.She is the product of what we call in medicine, an unremarkable pregnancy, meaning just everything went exactly how we think it should go.And she had an uncomplicated birth.

6:12

There's no indication that there's anything sort of health wise complicated with her until after she's born and she starts to display some symptoms of hypotonia, which is kind of decreased muscle tone.She has some feeding difficulties.She has.

6:28

This is a word I don't use very often.Choreoathetoid movements, which are irregular, jerky movements that you don't normally see in infants.And she has developmental delay.OK, so we see this all of the first few months of her life and the parents are concerned enough to bring this up with their physician and they do a work up.

6:48

She's eventually diagnosed with static encephalopathy, which is just to say that she has some sort of brain damage of unknown origin that physicians aren't sure exactly why it happened at first, but they don't expect that she'll ever recover from it.

7:03

OK?They expect her to remain at an infant level developmentally for the rest of her life.OK, so complete care is necessary.Not going to progress to making words or any type of progress.Gotcha.Yeah, so.So she's not sick.

7:19

There's no disease here.But she does have this permanent developmental delay that's incurable.OK, Years pass.Her family's taking care of her at home.They are really diligent caregivers.She starts to, let's just say so you're right, she she doesn't sit up, she doesn't ambulate, she doesn't move, she doesn't use language and and at this point, she's about six years old.

7:42

She receives all of her nutrition from a feeding tube, but her parents do say that she clearly responds when they vocalize with her and they care for her.So she's vocalizing, she's smiling, she's responding to her parents the way that an infant would, and there she's being cared for at home.

7:59

She about six years old, 6 1/2 years old, starts to go through early onset puberty.Wow, it's 6.It's 6.OK.So when people ask about this with children with this kind of developmental delay, that's not super uncommon.I wouldn't say that it's the normal progression, but it is something that happens with children with developmental delay.

8:21

OK, and in about 6 months she shoots up from the 50th percentile in her weight and height to the 75th percentile.So she starts this like rapid accelerated growth in a very short period of time when she's about 6/6 and 1/2.OK.

8:37

This is some Of course, her parents are concerned about this.They worry that she's going to get so big that they're going to have a hard time caring for her at home.OK, just like the size of her body and moving around and taking care of her in and out of bed, that type of thing.

8:53

Right, right.Yeah.So you can just imagine infants themselves, while they have a lot of needs, their needs are easier met because they're so small.It's easy to pick them up.It's easy to move them around.Even a six year old, a typical 6 year old.You know, I carry my 3 year old around.

9:09

It's possible.I don't.It's hard and it stresses my back out.But it's possible, right?Yeah.But of course, if he were much, much bigger, that just wouldn't be possible anymore.And so they're worried that the kind of intensive care that she needs is just easier when she's smaller and her growth at this point is making things more difficult and her early onset puberty, they're eventually she's going to get menses.

9:32

That's going to be difficult.She might get very large breasts, which would make it potentially more difficult for them to care for her at home.Yeah, so it'd be like the difference between caring for an infant or a toddler sized disabled person and like a teenager, right?Yeah, yes.

9:49

So their main concern here is we, we want to care for at home.These are parents who are really dedicated.They want to be able to do all of her care at home and they don't want to put her in some sort of institution, which historically lots of parents have done and is possible for them.

10:06

But really that, to them, is putting her in the hands of strangers and they think that her best care would be handled by them at home.Yeah, as many parents would as right.I mean, that feels like it would be my instinct as well.Yeah, yeah, this all seems really reasonable right now.

10:24

So totally predictable kind of reactions to to her body.What is perhaps unusual is that they go to their physicians and they say what can we do about this?What could they do, Tyler?Oh boy.I don't know.I mean, I guess we would start thinking about maybe some hormones like to delay puberty and onset of menstruation, that type of stuff.

10:49

I I guess if we're getting really kind of aggressive about this, we could look at like like growth hormone manipulation in some way to try to keep them smaller I guess.I don't know, those don't seem like run-of-the-mill type of interventions, right.

11:04

I think, I think generally people would say you know what, it's really difficult to care for a a disabled teenage sized person.But you know people do it.So maybe it's a matter of, you know, changing the physical layout of their house to make it more kind of disabled large and disabled individual friendly.

11:23

Maybe some more training or more people in the house.Right.Some more home care, bringing people into the home, learning to work with certain kinds of tools or apparatuses that can help move her body around more easily.So of course, lots of people with developmental delay are cared for at home by their parents or live in, you know, residential group settings.

11:43

So this is not unprecedented.That would be the typical course of action.You'd meet with folks in the hospital and they'd help you learn how to do these things.What ended up being unusual in this case is the doctors came up with a more potentially aggressive medical treatment plan and that involved high dose estrogen therapy to stunt Ashley's growth.

12:04

OK.It's like her physical size growth, like to make her smaller, OK?Yeah, they think it would just be easier to care for her if she remained at this size or not too much bigger versus growing to her full potential height.Because, again, she's not sick.She's not diseased.She will grow like any other child would grow physically in her body.

12:23

They're worried about how big that will be.They want to stunt her growth.How do we know that high dose estrogen therapy stunts children's growth?Because sometimes we do this.There historically has been, and this is funny, not funny.There was a time in which we gave this kind of therapy to to young girls who we thought would just be really tall and that it was like, socially undesirable to be really tall as a woman.

12:46

Oh.Man, yeah.So not something we do anymore, or at least I don't hear about that very often.Or just that kind of social problem of like, it's it's hard to be a tall woman, Let's stunt their growth, yeah.Yeah, we see the opposite, right.We see like in young, like adolescent male children sometimes that they're given human growth hormone in order to bring them from whatever, 5 foot 4 to 5 foot six or something as some sort of social utility, right?

13:14

Right.Because we think now that it's really socially disadvantageous for men to be quite short and we've given it this idiopathic short stature syndrome.So we've given it a medical label.And this is men who don't actually have a growth hormone deficiency.

13:29

So there's nothing wrong with their hormones.They just are projected to be quite short on the sort of statistical graph of of male height.And so, yeah, so we do sometimes now give growth hormone as a way to get boys to be taller.Yeah, another probably whole episode we could do on that.

13:47

Human growth hormone, right?Right.Yeah.Is this ethical or not?But parents want it, right.And so you can imagine why these parents would want this.They want to keep her a little bit smaller.We know that giving her high dose estrogen therapy might be able to do that.So that is proposed by the medical team in addition to a prophylactic hysterectomy taking out her uterus ahead of any potential complications with it.

14:13

There is some small degree of risk of cancer when using this high dose estrogen therapy, but also the parents are thinking they don't want her to ever have menses.You can prevent that by taking out her uterus.They also don't think she should ever get pregnant, right?So she's not a person who could ever consent to sex, and so her getting pregnant would be pretty traumatic for her body.

14:34

Wait, wait, wait, wait.I think that there are other ways to prevent pregnancy than a full hysterectomy for a six year old.Just saying.There are I I'm going to show you something in a second about that, you know, complicates that rationale.Because yes, of course having a uterus enables you to get pregnant, but it doesn't prevent things like rape.

14:50

Great point.Let's get into that in a second.They want to do breast bud removal.They don't want her to develop breasts and then while they're in doing the hysterectomy, probably do a prophylactic appendectomy.If she were to ever develop appendicitis, it'd be really hard to for her to communicate where that pain is coming from.

15:08

So while you're in there, might as well take that organ out anyway.It's pretty useless.I don't know.I think we're the the jury's out on this, but we don't seem to need an appendix.That is the proposed treatment plan.And this was proposed by the healthcare team or but did the did the parents do their research and come in and say here they're all the things we want to do to accomplish this goal?

15:31

Yeah, I think it's a plan that they come up with together, OK.So like the best of shared decision making, they're providing their concerns and their values and their hopes, and the medical team is responding with certain kinds of interventions that could help meet those goals.Gotcha.

15:47

So it's both medical, pharmaceutical and surgical interventions.Right.I want to show you, I think this is fascinating because I've never seen anything like this.I'm sending you a chart that was actually created describing all of these interventions that was actually prepared or developed by Ashley's parents.

16:06

OK.Can you open that up?Yeah.OK.So this is the Ashley treatment PDF, yes.All right, Ashley, treatment for the well-being of Pillow Angels copyrighted.Ashley's parents and other parents call children with this kind of profound developmental delay pillow angels.

16:23

OK.Can you tell me more about that?Well, so the idea being that, like, they don't ambulate, so they're constantly laying down, OK, And I think it's meant to be endearing, right?They're, they're angels.And they just like rest on a pillow.

16:41

Yeah.OK.All right.OK, but it's a podcast, so you have to describe it.Oh yeah.OK, so we got this.Yeah, that's true.Good point.So we've got this, the the chart.It's entitled The Ashley Treatment for the well-being of Pillow Angels.So it's got a the the top part has a Ashley's condition where it says severe brain disorders since birth remains undiagnosed, which I assume means that like they don't know the cause of it, the etiology of it permanently UN unabled in parentheses infant.

17:14

It's not a term I'm used to.We would probably say disabled.Disabled OK Got you permanently unabled infant level mentally and physically and will not improve.Average adult size was expected.Average lifespan is expected.OK, yeah, children.OK, so the next part says permanently unabled children, who we affectionately call pillow angels, form a new category of disability.

17:36

Survival was made possible through recent medical advancements.Constitutes less than 1% of children with disability.OK.Profoundly dependent.Quality of life is richer under their family's care.OK.Overwhelming majority of their family and caregivers believe that increased weight and size is their worst enemy.

17:53

I can, I think I can think of worst enemies.An extreme condition that calls for individualized options in the hands of parents to keep their children.All right.So that's just kind of like a description of her condition, yeah?It's it's yeah, it's almost like setting the stage and then it goes down into kind of the different treatment options and their their justification, right.

18:14

So and it categorizes them in improving her quality of life and also primary benefit to Ashley as like different reasons for doing these things.So breast bud removal, hysterectomy, appendectomy and sizing for Wellness and this is OK.

18:30

So this is the estrogen, estrogen patch for two years to speed up puberty closure of growth plates.OK.This is kind of getting into the weeds more than I understand.But yeah, interesting.So there's different treatment options or things on the table and then there's a little bit clarification of what those would entail and also the the justification for them, right?

18:50

Yeah.Like really interesting.So that her parents feel this need to kind of justify ethically justify why they would intervene on her body in this way.And, and in some ways this makes sense because it is unusual to give surgery and like high dose a hormone treatment to a child who doesn't quote, UN quote need those things, right.

19:11

She has no pathology, like they're not fixing anything.They're treating, quote UN quote, treating her body so that other kinds of interests can be met.And we can debate whether these are her best interests or her parents best interests.But the idea of keeping her smaller is not because that is healthier for her in any typical way.

19:29

We're going to talk about healthy, but because it makes her body more easily managed by her parents who want to be able to take care of her.Her best interests and their best interests are aligned, and they're justifying each of these procedures for her benefit.Gotcha.

19:45

Yeah.And I think in what's complicated about pediatric ethics cases in my mind is that there's the the child's interest, the patient's interest and then the parents interests.And then there's also kind of a broader, like family interests as well.

20:00

And they all kind of overlap most of the time, but not all the time.So this is interesting and the way it's framed as her best interest being front and center where I I don't know.It almost feels like some of these things are.I think convenience might be the wrong word, but for ease of caring for her at home, which is what the parents said that they're trying to do.

20:19

Like for adult care, we wouldn't tolerate this.I think in my ethics we don't tolerate this kind of argument quite as much.Like we don't say if somebody were like an adult, we're in a nursing home.We wouldn't say, gosh, it's just easier to sedate them all the time because when they're awake they're hard to take care of.

20:36

What we would say that's in a an inappropriate intervention for the convenience of staff, right.I think this is different than that.That's not what they're arguing, obviously, that they're but that.But the her interest in the parents interests are really enmeshed.Because what's going to be best for Ashley is that her parents take care of her.

20:53

Ergo, things that make it easier for parents to take care of isn't hurt.So you can see how it gets a little bit more intertwined in pediatric care.And I think that that's right.We shouldn't be able to make an easy delineation.However, collapsing them might be a problem.

21:09

So I want to get into that in just a second as we start getting into like how ethicists view the case.But just to show you this, this chart is really interesting that they made, the fact that they felt like they needed to make it, it is super interesting to me.Yeah.And so this is, and this is still up on that that website thepillowangel.com.

21:26

Yeah.org.org yeah.org.Got it.OK.This is the proposed treatment plan.Like I said, it's the high dose estrogen therapy, it's the hysterectomy, the breast bud removal, the appendectomy.This is a suite of things and they would do them pretty rapidly and of course this is, this is novel at the time.

21:45

So the pediatric team goes to their hospital Ethics Committee and they say what do you guys think?Is this, we're going to call it the Ashley treatment?OK.Is the Ashley treatment ethical?Can we go ahead with it?OK.

22:00

So imagine Tyler, you are on the Ethics Committee.What questions kind of come up for you about this?Oh man, I mean, some of we we've touched on, right?So whose interests are being maximized through this treatment.And also like I, I first of all I'm impressed at the foresight of the the team to go, you know proactively to the to the Ethics Committee and kind of get a thumbs up, thumbs down in advance rather than going ahead and doing it.

22:26

Then you know it's a different you know, asking for permission versus asking for forgiveness type of thing.I'm I'm glad they did this.I I think that I don't know if if if I were this were approached to an Ethics Committee that I was on, I would really try to be careful about identifying which treatments instead of looking at it like the Ashley treatment, like a whole suite of things like looking at each individual question or treatment or intervention kind of on its own merits.

22:53

And then see if they all are justifiable independently and therefore can kind of come together as a comprehensive treatment plan.But I don't know that may be asking too much of A lay Ethics Committee.Right.It kind of depends on who's on the Ethics Committee.Is this a group of physicians?

23:08

I think it at least has a physician leader.But I think for sure any Ethics Committee is going to ask things like what are the potential risks and harms of these procedures?What are the benefits?Whose benefits are we really talking about?

23:23

Is it benefit to Ashley?Is it benefit to her parents?Can we actually distinguish those things Are they fully informed about what all this all those risks and and alternatives do they really understand all the things that other similar parents are able to do with their larger developmentally delayed children The autonomy kind of capacity question you might ask a lot of people ask when I present this case you know are we sure that that her condition because we don't know what the origin is that it won't be reversible right.

23:55

Like, what if down the road we decide that she actually does start gaining some capacity and suddenly we've taken all these things away from her?I'll kind of just preemptively say they're pretty certain that even though they don't have a definitive diagnosis that there's no chance of her maturing in that way.

24:14

So to like sort of gain full medical capacity to make her own decisions, they think that that's just not possible.OK.So if anyone's curious about that, there you can never be 100% certain.And and the Ethics Committee does ask this and and they just decide, they don't think that that's possible given what they know.

24:30

They have pretty, they're pretty certain that that won't happen.These are all the kinds of questions you ask.They deliberate, they meet with Ashley's parents, they meet with the physicians.The committee decides that the Ashley treatment as proposed is ethically appropriate for Ashley.OK.

24:47

All right.So, end of story.Short podcast.Just kidding.I think we have more questions.There's been lots of retrospectives on this case, so here's just one summary from an article I read.It's titled The Curious Case of Ashley X.This is how they summarize the case.

25:03

In short, the primary goal of the treatment was to improve Ashley's quality of life by prematurely closing her growth plates and by keeping her small enough that her parents thought she could be cared for at home by her family.The secondary goals, according to the Parents blog, included the prevention of sexual abuse.

25:19

Definitely want to talk about that in a second?Prevention of discomfort from large breasts.Prevention of pain and hygiene issues from menstruation.Prevention of skin breakdown and infections?That might not be obvious.So the idea is that if she's bigger, it's harder to turn her in bed.

25:35

So if you can't ambulate and you're bed bound, our worry is that you're going to get bed sores.Because, you know, there's like certain parts of your body that are touching all the time that can rub.And bed sores are really terrible.And to to prevent them you have to constantly turn people over.

25:51

And that's just easier to do if they're smaller.So that's kind of the idea there.And and that's a risk for anybody who's bed bound, right?And and.Absolutely.Yeah, it it they're almost so common to the point that even really, really excellent nursing care and and movement and and turning and bed changing and all that stuff doesn't guarantee that you're gonna prevent bed sores.

26:10

Anyone who's bed bound will eventually get bed sores if they're bed bound long enough.Ease in bathing, ease in fitting in a wheelchair harness.So if they wanna get her in a wheelchair that they can strap her into, It's just easier if she's smaller.So the parents also know on their blog that this is a quote.

26:26

Given Ashley's mental age, a 9 1/2 year old body is more appropriate and that's what they so they think that the growth will stunt around a nine year old body is more, This is the quote, appropriate and dignified than a fully grown female body.That raises the That raises some questions.

26:45

I.Have lots of questions.Yeah, there's a couple things in that in in there that like really raise a red flag for me.OK, let's, let's pause this for a second.OK.So Ashley's physicians perform the treatment plan following the ethics committee's approval and everything is uneventful.

27:01

It goes well.The treatment has no complications and there haven't been any complications reported since.And this has been, you know, over 20 years ago, so.So so they did all of the things.They did all those things.That's right.OK, Ashley's parents have made a couple of kind of public statements about this, both in the media and on their blog.

27:17

So here's the rationale given by Ashley's father.Ashley's most important human right is not to be blocked from receiving a treatment that her parents, doctors and Ethics Committee all agreed would benefit her.Depriving her of those treatment benefits would cause pain and suffering, and that would be taking away her human rights.

27:37

So the human, the human right of being free from pain?Is that what they're kind of?Or hanging their hat on.Yeah, it's a little confusing.This is not typically how I'm going to talk about human rights, but like the right to treatment that will prevent pain and suffering in the future.I want to talk about, I think, what pain and suffering we're imagining.

27:56

And they later say Ashley's smaller and lighter size make it more possible to include her in our family life.We continue to delight in holding her in our arms.She'll be taking on more trips, more frequently, and social gatherings instead of laying down in her bedroom and staring at ATV or the ceiling all day long.

28:14

So because of her smaller size, they're able to take her places, which is I think most people would say yes.No matter who you are, watching TV all day, every day is not a good quality of life.Yeah.So I mean, it kind of makes sense, right, that if she is smaller that she'll be more integrated into the family, they'll be able to do more things.

28:33

But there's a lot of disabled, very, you know, severely disabled teenage people in teenage sized bodies or adult sized bodies who are able to do those things as well.Their families are able to figure it out, right?Yes, this might be a critique that you would make.OK.So when she's around 9, Ashley's primary physician and the head of the Ethics Committee write an article that's titled Attenuating Growth in Children with Profound Developmental Delay.

28:58

So they discuss everything that happened.Can you imagine people potentially raising some of the questions that we've raised after reading that?Yeah, I think, I mean, it's one thing to do this kind of in a somewhat closed environment where there's an Ethics Committee and and a treatment team and a family and you guys all come together and make a decision about how to care for this person.

29:20

But then I think you're really open.You must be really confident in your analysis and your ethics and even just the medicine itself to turn around and then publish it, right?I mean that that feels like opening and saying, here's what we did, critique me, right?

29:37

That's what it feels like.Critique me or do likewise.Oh yeah, right.So so there's like a couple of reasons why you might publish on a case.But all of those reasons, I think, boil down to teaching the audience both what you did in either saying we messed up, you need to know why we messed up, or we did a great job and you should consider doing this in future cases like this, Right.

29:58

So this is their rationale.In the paper they say when deciding whether it's ethically appropriate to attenuate growth in these children, there are two primary considerations.First, does growth attenuation offer the patient benefit?And 2nd, does growth attenuation do any harm to the patient?

30:13

I love that they just boiled down all of ethics to harm versus benefit, but OK, So the question here then is whether there's a reasonable expectation of improved quality of life for a non ambulatory child with profound developmental delay and at what risk.So these are their big questions.

30:30

What are the benefits?What are the risks and how are we weighing those against one another?These are.That's not a bad that's an obvious question.Any case, there's very few cases in which you're not weighing benefits and harms.I actually don't know that I can think of any case where that's not a question.At least I don't know that it's always the only question for the even the primary question, But it's definitely always a question.

30:50

Yeah.And I think, I think the point is that it's not the only question, right.So I think ethics should not be boiled down to just a cost benefit analysis, right?It's more complicated than that.We're not all pure consequentialists or utilitarians, right?

31:07

So but also the parents weren't making a purely consequent like a purely cost benefit justification either, right?I mean they were talking about human dignity and they were talking about like integration in the family and these more dignity or virtue based justifications.Right, right.

31:23

And and I think that those maybe not at the time, maybe at the time that was seen as like too much to get into and this kind of bioethics write up.But I think these days those questions would definitely be important to ask and then to write about if you were going to write up a case like this.

31:40

And I'm not saying that they didn't bring that up at all in their paper.But when you say they're really just two ethical questions and then you outline them that way, it does allied some of the more nuanced questions about dignity there.Let's just say if that was the approach we took in like a paper in grad school, like we might, yeah.

31:59

OK, so for them, I think that, you know, the rest probably is somewhat predictable.They're going to argue that it's her in her benefit to be smaller so that she, her body is less burdensome and more accessible to her parents.Burdensome is such a tough word for me there.

32:16

A smaller person is not as difficult to move and transfer from place to place.And they talk about, you know, that it seems like this is for the caretakers rather than the child, but actually it's really for the child as well, because a child who is easier to move will be moved more frequently.Right.So again, they're kind of just saying it's really hard to tease out what's for the parents benefit and what's for the child's benefit because really what the parents are asking for will also be for her benefit.

32:42

You know, the concept.If you're a real consequentialist, the consequences of that will be predictable in the world that we live in.It's just going to be easier to take her places to move her around.That's all for her and the parents want to continue to care for her.They will.They potentially will find themselves unable to do so if she grows to an adult size.

33:00

It's not the only considerations, but because it's what the parents want, we're willing to do that for them and they end it like this.For all these reasons, growth attenuation in the non.I hate when we do this too in the non ambulatory child, as if she's like representing all non ambulatory children with severe developmental delay seems mutually beneficial for caretakers and patient.

33:23

There does not appear to be a conflict between the interests of the parents and the interests of the child, so there's no conflict there.They're not saying that they're collapsing them, but in this particular case there's not a distinction.What's good for them is good for her.Therefore we do what the parents want.OK, OK.

33:39

I mean as far as far as like ethics case write ups go, I mean, I've read worse, right?Sure.I've read, yeah, yeah, no, no.And the and the ethicists who published this is a a well respected ethicist.So not disparaging that in any way, but this gets published.

33:56

It creates kind of a frenzy.What might be a kind of group that you can imagine that is going to take Umbridge with this treatment plan?Oh man, I think that there's a long line of people, I would say.I mean, disability rights advocates, I think might have some questions.

34:14

I think parents of current you know, disabled individuals, I think that there's a question about whether or not this is what medicine ought to be used for.So I think people who are, you know, the tools of medicine is what I mean.So kind of a question about is this is this good medicine or is this something that's kind of outside of the that realm of what we think to be the purpose of of medicine.

34:40

So it it almost feels, and maybe this is a bad analogy and you you'll laugh at me for this, but it it almost feels more like cosmetic surgery than it does curative surgery where where these things are doing not not for aesthetic value but almost for convenience.

34:56

You know, the ability of these other interests to be to be maximized and not specifically disease treatment or illness or you know that type of thing.But, but you know that maybe that's just too simple.No, I think so.You're exactly right that it's going to be the disability community.

35:14

That is many folks are from that community, are going to be upset by this because, well, for a lot of reasons that I want to get into.But yeah, the idea that we like, just manipulate the bodies of disabled children for the convenience of their parents, that's going to upset a lot of people.

35:30

And I think just like you said, what is, what is the purpose of medicine?Should medicine be trying to fix our bodies to make us more comfortable in a social environment?And that comes up with cosmetic surgery?You know, it's not a perfect analogy, obviously.So I don't want to, like, totally equate these things.

35:46

But it does seem to be like somewhere in between something like cosmetic surgery and something like, you know, fixing a pathology, which is typically what we think of medicine is doing, is like, there's nothing wrong with Ashley's body.And yet we're doing a lot of things to Ashley's body, like permanent things to her body that will forever change her body.

36:05

Yeah.And we should be really careful about that.So I have this great quote by somebody.I did not expect to have this quote.This is a quote by Art Kaplan, who, OK, is a famous bioethicist, in that he's always on the media.Like he's always being interviewed about ethics cases.We need to figure out how to get that job.

36:22

How do I get to be the person who gets to comment on every ethics case?Maybe I maybe I.Don't wanna be the case, you can have that job.Yeah, maybe not.But he says keeping Ashley Small is a pharmacological solution for a social failure.The fact that American Society does not do what it should to help severely disabled children and their families, permanently freezing a person into childhood is not the answer.

36:43

That's a very bold assessment of this case, I think.Yeah.Yeah.That's interesting.And and I agree with kind of the the overall sentiment like it's not the case that we're fixing disease or pathology or something that like we said, but also Ashley's body for all of its disabilities and all of the the ways in which it is not functioning the way it should be.

37:06

The things that we're now going to intervene with are actually her body functioning properly, right, growing and maturing and and all those things that physiologically a body should be doing.So we're actually short circuiting the parts of her that are actually functioning somewhat normally.

37:24

Yeah, a healthy woman grows taller from childhood and develops, typically develops breasts and has menses and and This is why I think it gets to like, what does it mean to have a body?Like what is the purpose of a body?We would never want to say something like, well, if you're not using your breasts and you're not using your uterus, it'd be perfectly fine to just remove them.

37:47

You know, like if they're not going to be useful to you.So if you're never going to breastfeed and you're never going to have children, and then let's just get rid of those things.Like, that's not typically, like, if a young woman came to her doctor and said, like, there's nothing wrong with my breasts and my uterus, I just want you to take them out because I don't think I'm going to ever have children.

38:03

Yeah.I think there would be a lot of questions about, right, whether that's appropriate or not.Yeah, And and that's kind of even, leaving aside the the issues of like gender dysphoria and and other reasons why, you know, people would pursue A surgical removal of breasts and otherwise healthy, healthy breasts, right.

38:20

Or other, you know, whatever parts of their body.But yeah, this is this it it it almost dances between a couple of different issues and straddles different and maybe even conflicting justifications as it kind of progresses, I think.Yeah, yeah.

38:35

So this this case often gets deemed something like a medical fix for a social problem or or the ill.If there's anything that's I'll it's you know, a social I'll our society is not very good at supporting families with disabled children.That is just true, right?I I don't know anyone who would argue that like we're doing a great job caring for disabled people amongst us.

38:56

Nobody would argue that we're doing a terrible job.And so a lot of disability advocates will want to talk about like a social model of disability.So the quote, UN quote problem with disability is that our society is crap at accommodating people with disabilities versus the problem with disability is like individuals have like bad bodies and we should fix those bodies, right?

39:14

So that's a pretty different orientation.So if you take the kind of social orientation, it's like what can we do to support Ashley's family to care for her in her developing body versus like how do we fix her body so that she's easier to care for by her family.That's a real what some people call a medical model of viewing her body.

39:32

Her body is the problem.Her body is the thing that gets fixed.Right.And we have tools in which we can fix that, those things.So we ought to do that.Yeah.Different.Yeah.Different question.We often get interesting kind of alignment of of interest from cases like this.

39:48

But what what was the religious view of this?I mean, because we we, we often hear criticisms of ethics is, you know, playing God.However, what whatever that means to an individual person.But were there folks making the case that this is, you know, Ashley's body is perfect because God created it in this way.

40:07

And we're quote UN quote playing God by intervening.That's a big one.Yeah.No, no, no.That's like I wrote a book about this.So I think it's more complicated than that.So there is a I didn't see in this particular case as much of like a religious reaction to it as as some of the other cases we're going to talk about.

40:27

Very few religious groups are going to say something like all bodies that are born are good, therefore let's not medically intervene upon them.That's a pretty rare religious argument because most of us think like, insofar as you think it's OK to use medicine, then there's lots of good uses of medicine for newborn children.

40:45

But there is a kind of Catholic argument I've heard that is something about kind of the internal dignity of the body, the inherent dignity of a body that requires a lot of justification to intervene upon, and that some of this might constitute A mutilation.

41:01

This is a word that I think is not common in secular bioethics, and it sounds real because I think it sounds really harsh.But there are, like appropriate mutilations of the body.Like there's times in which you'll have to, say, surgically remove a part of the body because it's so diseased that it's risking the rest of the body.

41:17

But you wouldn't do that unless you had a really good reason.Like you had a reason of like, it is bad, but it is a lesser bad than the bad of like that, you know, maybe a gangrenous limb killing somebody.So you have to surgically remove something to protect the rest of the body.

41:33

That's the justification.But for her you can't make that justification.And so this would be an like an unnecessary mutilation of the body.That would be the only specific religious argument that I saw coming up more than once.But like the kind of playing God argument, I haven't heard quite as much.

41:49

OK, OK.So I want to do like a quick recap kind of pro and con or the, you know, the pro Ashley treatment, anti Ashley treatment.I think the pro we've we've pretty much encapsulated the idea that like the harms are fairly limited, the risks are pretty limited.

42:05

These are surgical interventions, but they're not uncommon.And we could have predicted the risk of these surgeries, which the parents thought were worth it.We cannot if we're gonna talk mostly about best interests, and this may be.I don't know if we've talked about this on the podcast as much, but typically when we let a second party make a decision for the patient like a parent, we sometimes will talk about like substituted judgement.

42:28

So well what would the patient have wanted if they could speak?That's not going to be the case here because Ashley has never been able to have the voice kinds of preferences for herself.So instead we use a bet like what's in her best interest.That's the standard proponents of the Ashley treatment will say.Her best interest can't really be separated from her parents best interest.

42:46

We shouldn't perpetuate this myth that parents are like these sacrificial people who only work for the benefit of their children.Their convenience is also important.Their ability to care for her is really important.Some will argue this isn't really violating her dignity because she has no autonomy or interests.

43:03

That kind of dignity.Arguments don't make sense here because she's not going to be able to fulfill the use of her body and the ways we typically talk about it.I have huge problems with these arguments.Just, you know, so some people were saying, you know, well, she's never going to be able to, like, marry and procreate and live an autonomous life.

43:18

So those organs aren't as useful to her.So let's cut them off and throw them away.Yeah, we again, we're not going to make that kind of argument for other people.I'm not sure why you'd make them for her, but these were arguments that were made.People were worried that there's some sort of disability agenda happening here.

43:34

These disabled folks aren't really, they don't really care about actually trying to push their agenda on us.It's an ideology.We're really just talking about Ashley and her parents.Social supports are good, but they don't really exist in the way that they should.And it'd be nice if we lived in a utopian world in which, you know, Ashley's parents had all the support they needed.

43:50

But that's not the world we live in.We need to, you know, respond.In the world we live in.We can offer these medical treatments.We can't change society into the kind of society we want it to be.And it's really her parents right to make this decision.This is a private matter between her parents and her physicians.

44:06

And we shouldn't, you know, be trying to push other people into that conversation and that this is really a good use of medicine.So it's OK sometimes for medicine to intervene for social rationale for social goods.OK, all right.I mean, there's a lot of good arguments there, some not quite as strong.

44:26

There aren't good arguments there.Yeah, this will happen on both sides.Of course.The counter argument's something like a real questioning of whether it's really in Ashley's best interest or her parents best interests.So there are real, serious and unknown risks of this therapy and the parents interests really shouldn't trump those of their children.

44:44

We're not asking them to be like sacrificial beings, but we are saying that the child's interest always should trump and that we should do our best to separate those.There were a lot of arguments about the violation of her body and her rights.The idea here, I think that we sort of said like we shouldn't intervene upon her body with medicine unless it serves her needs.

45:04

And it's it seems like we're intervening for some sort of vague future threats that aren't actually even potentially happening.So there's like fear that she'll be too big, that she won't be able to be cared for, that these are all kind of like future worries that may or may not actually come to fruition.

45:21

But this is like a present, like intervention upon her body for some more or less vague threat about her future.Others will argue that she is being made into a perpetual child and that this violates her dignity.And this is a problem always in the disability community is that people with disabilities, especially cognitive disabilities, are seen as like, perpetual children.

45:40

I've even heard some people say like, well, it's good that her body matches her mentality and this really bothers me, right?What I mean, what does that even mean?Like that we have this kind of expectation that you know, as your body gets bigger, so your mental capacity also grows and that those things need to match.

45:57

And so for that to match, she needs to be kept small.But gosh, is that so insulting to, like every adult in a adult size body who has a developmental delay?Or or an adult in a very small body.Right.Or a little person.Right.So yeah.Which also I I know lots of little people will say, like they get treated like children all the time and that's like pretty gross.

46:17

So the idea that your mentality should match the size of your body, I think let's just squash that.That is wrong like from both ends.Yeah.There's also arguments about like her gender and her parents preventing her from becoming a woman, and that there's like a dignity in growing into a woman's body that's being prevented here.

46:34

Breasts are inherently good.We don't need a justification for their usefulness.Cutting them off isn't good for her.Like needs a better justification than just than they gave.Yeah, I think it's also, it's also something we haven't talked touched on is that she is disabled to the point that she won't be able to appreciate any of these things.

46:55

So it's not like she's gonna feel one way or another about being dignified or receiving the benefits of these things because she is profoundly disabled.Right.And that's what the Pro Ashley treatment argument side will say is that whatever good comes from the woman's developing body, she can't appreciate.

47:14

It's weird to talk about potentially, like the dignity of those things if she herself can't appreciate them.I think the battle really there is like, is there an inherent good that is there, regardless of whether you can appreciate it or not?And if you think that you need to be able to appreciate it in order for it to be of value to you, then you can see why you'd be a little bit more for this treatment than against it.

47:36

So I think these are really like, these are kind of almost like ontological.These are like deep questions about the purpose of the body that I don't think bioethics itself can answer, but it's good to raise them right Also.And we sort of skipped over this, but there was this argument that a fully mature woman's body would be more attractive to a potential predator.

47:58

And I just don't know that this is empirically true.So the worry was like, if she develops breaths and she look like looks like a flourishing woman in her body, that she'd be more liable to be abused by a potential caregiver.I can't.I just, I'm not sure that that's true because lots of children are abused, like sexually abused and who don't have sort of adult bodies.

48:21

Yeah.The statistics on the amount of people with developmental disabilities who are sexually assaulted is really high, but I don't know that we can say like that's because they have attractive adult bodies.I just not sure that that's true.Yeah, that puts some blame a little bit on the victim.

48:37

Right, right.If her body hadn't been so attractive, maybe she wouldn't have been assaulted.Like that's that's gross.That's gross, Yeah.So this keep what keeps coming to mind is this idea of proportionality, right.So if we have a harm we're trying to avoid, we should try to avoid that harm, but only do things sufficient to avoid that harm.

48:59

And what I mean by that is like, you know taking a gun to a knife fight you, you don't want to disproportionately react to or or overtreat.And so these questions like her potential potential for being abused, like that's real and present and and and something that that's terrible within our society.

49:18

But there are other ways in which we can ameliorate that risk rather than all of these things, right?You know her.And again, I think that kind of speaks to the the social side of this whole issue, right the the social ills.Yeah, let's just try to find other beings to prevent her from being abused then.

49:36

Like modifying her body to make it less quote UN quote attractive to an abuser.Yeah.So, and then there's an argument.We've talked a little bit about the, like the medical model of her body versus the social model from a disability perspective.But there's also this, like, worry about precedent.So a lot of folks who are like, gosh, if we can do all of these things for Ashley, what's to say that, like, the next parent with a developmentally delayed child can't go even further?

50:01

Like, she doesn't need her legs.Should we just be able to remove those?She can't use her arms.Like, you know, at what?When do we stop with, like, medically intervening, surgically intervening upon a body that has parts of it that are quote UN quote useful?So where does it end?

50:17

And and we, I think, have to be careful about slippery slope arguments, of course.But you can see kind of that fear of like, if this is like, everyone just finds it ethically acceptable to intervene in these ways.Where does it stop?Yeah.And and if the justification is the usefulness of that body part, I mean, there's a lot of parts of people's bodies that aren't being used and not just people who are disabled, right.

50:35

So you think about somebody who's permanently, you know, paraplegic and never going to walk again.We don't proactively remove their legs because they're not useful, right?That's just not something that we do because of a whole list of other reasons.Right.We'd have to have a good justification for doing so.

50:52

And and that does sometimes happen.But yeah, it's not that you don't go.I don't think you're ever going to walk again.Let's just take those legs off now.That's not typically the reaction.Yeah.Yeah.What I want to say, by way of some conclusion, is that I think they're really strong arguments on both sides of this case.

51:08

It's not obvious to me that, like, this is one of those cases where something was just done wrong.To Ashley, I I do have my own if I had to go one way or another.I do have a preference.But I do want to admit that, like, both of sides on this argument make really compelling cases about what really should be the work of medicine.

51:26

Yeah but and and I think what's impressive about this case and the stuff that I've read about it is the the thoughtfulness of the team and the family and the the Ethics Committee and the ethicist who who wrote about it.I I think coming to that same space that you are that there are good reasons on on both sides.

51:47

We're picking one because we have to pick one and we're these are our justifications and and holding that up and saying you can use these justifications for other things, but that's on you, you, you, you are a moral agent and you get to make your own choices.But this is how we came to this this conclusion for this case at this time.

52:05

Yeah, I mean I think maybe what I'd want to say didn't happen so well is so this got so much backlash after they published it that I know that these things still happen.So if we talk about sort of effect on future cases, the Ashley treatment is still, it's not common because I think children like Ashley are uncommon, but that it does still happen and it doesn't get published on anymore because people are afraid.

52:31

Both the parents and the clinical team, for good reason, I think are afraid of kind of the public backlash against it.So it happens that Ashley's parents say on their blog that they've met maybe a dozen other families who have done a similar sort of treatment plan.

52:48

In the grand scheme of things, that's actually not very many.There's probably more that aren't talking to them, but I I think I want to be.I do want to be careful about like this, setting some sort of precedent because I think that there's real caution that we need to have in these sorts of cases.

53:03

Yeah I think maybe the most not I guess maybe troubling the the thing that causes me pause about this case is that chilling effect is that you know I think it's really noble that that they went through this analysis and and proactively thought about the pros and cons and and came up with the justification and then did it and then published it.

53:25

I just think that transparency in these situations and being willing to to stand up and say this is what we did may be controversial here's why we did it let's discuss I mean that's that's the work of bioethics in in my in my mind and anything that shuts down conversation I think it it's not what we're trying to do.

53:43

I think what I'm trying to do is in in ethics.Yeah.I think that's a good point.And and just because you want to critique it, I I hope you don't mean and I don't think you do that like, therefore we should be really careful in the ways we critique how they went about their ethical analysis because we don't want to chill other people from publishing about it.

53:59

No, no, no.Yeah.I mean really like we need to have open conversation about this.And I think it's unfair for me.It's deeply unfair for some of the ethicists who said, you know, it's just this these disabled people in their ideology trying to force it down, you know, every case.That's not fair.

54:15

People who have children with disabilities have a lot to say about what it's like to care for them right in their adult bodies, and they should be able to say that, right?That's part of the discussion if there's an alternative.So lots of parents came out and said, listen, I have a kid like this and they're in an adult body and here's how I take care of them.

54:32

That's an important perspective as it is.Some people were like, listen, my kid, who's like Ashley, lives in this residential facility and you guys made it sound like these are all horrible places where everybody goes to die.And that's not true.There are some wonderful facilities that children can live in because maybe it's not appropriate that they're always home with their families.

54:51

Maybe they're it's OK to, you know, talk about residential living for our children with disabilities.And and if you make it sound like everybody there just goes there to die and get abused, then those places will never flourish.Yeah, I think there's also an element of Ashley's parents being I I think they, they had some privilege within society as well-being, able to imagine a situation in which they were able to, you know, access this healthcare and pay for it and and be able to care for their child at home.

55:21

And there's a lot of scores and scores and hundreds of people across the country who may be in a similar situation, who don't have the means and resources to even contemplate something like this.Yeah.Well, I think there's so much to say about this case.Gosh, we've talked about it for an hour.I could probably talk about it for another hour, but nobody wants to listen to us talk for two hours.

55:40

Probably they capped it at an hour so.Yeah.All right.Well, good case.All right.Thanks, Tyler.Thanks for listening to this episode of Bioethics for the People.We can't do this podcast by ourselves.We've tried, and it's not pretty.Our team includes our research interns, Michaela Kim, Madison Foley and Macy Hutto.

55:59

Special thanks to Helen Webster for social media and production support.Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two, and husband to 1.Podcast art was created by Darian Golden Stall.You can find more of her work at Darian Golden stall.com.

56:16

You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.We love to connect with our listeners.All of our episodes can be found wherever you listen to podcasts.Please like, subscribe and share and connect on social media.

Tyler and Devan walk through the infamous US Supreme Court Case of Buck v Bell (1927) in this episode. Buck v Bell has a dark legacy that includes forced sterilization, eugenics, disability, and violence against women.

Further Reading:

• Wolfe, Brendan. Buck v. Bell (1927). (2021, February 12). In Encyclopedia Virginia.

• “The Forgotten Lessons of the American Eugenics Movement” The New Yorker, April 2016.

• Lombardo, Paul A. Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell. Baltimore: Johns Hopkins University Press, 2008.

• Eugenics and Scientific Racism (2022) National Human Genomics Research Institute

• No Mas Bebes (2016) PBS Documentary

• Disability’s Challenge to Theology: Genes, Eugenics, and the Metaphysics of Modern Medicine, by Devan Stahl (University of Notre Dame Press)

Transcript

0:03 

Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics.And he's Tyler Gibb, who, according to his students, is best described as the GOAT of bioethics. 

0:28 

All right, Devin, I've got a case for you.OK.Well, that's kind of the theme of the whole season.So I I would hope so.Yeah, so this is, this is a tough one.I mean not that any of our cases are really like sunshines and roses and feel good stories, but this one is particularly gross. 

0:48 

Can we say gross?Yes, it are there any like?Warnings you want to give to listeners before we start, then I guess.I I mean, it's kind of always a good idea to to warn people what they're getting into, but this case involves for sterilization and eugenics and also some really terrible mistreatment of people with disabilities and people without disabilities. 

1:14 

OK.If it's the case I'm thinking of, given what you've just said, is there also?An account of rape.Yes.Yep.All right.So with that caveat, what do you know about the case of Buck versus Bell? 

1:35 

Yeah, I know a little about this case because I do work in disability and this is kind of this Seminole case, I suppose.I don't know kind of the intimate details.I know the broad strokes of the case of a.A woman with an intellectual disability who was kind of seen as the the case that made its way to into the courts to allow for sterilization of people in the early 20th century. 

2:04 

So this is kind of that case, right?Yeah.So all of that what you said is right.So let's let's just kind of walk through the case.So this is the case of Carrie Buck versus Bell.And so we're talking about Virginia in the 1920s mostly. 

2:25 

So this case, I think it was decided in 1927 was when the Supreme Court case was actually published.But kind of the things going on in this case are early 1900s moving into the 1920s.Ish.OK.So get that time frame in your mind. 

2:43 

I'm getting wait, wait, let me put myself.OK, short haircut.OK, Yep.Yeah, I got it.Yep, Roaring 20s.The The Roaring 20s of the Gatsby's do not make their way into the the lives of the the poor, disadvantaged individuals living in rural Virginia in the 1920s. 

3:03 

So.Right.So different frame of mind.Different frame of mind.Yep.We're not doing.We're not dancing and drinking martinis here.OK All right.So this case centers around a particular law.And this law was, I think, probably controversial even at the time. 

3:24 

But it was a law that a lot of people were really jazzed about, So and so much so.And we've talked about in other in other podcasts where people, particular lawyers who or individuals who want a particular law on the books or a law taken off the books, we'll use this idea of targeted litigation. 

3:53 

And so the idea is that we have this law we want to make either get it proven unconstitutional and and canceled thrown out and or we want it to be like given the the thumbs up, green light by the Supreme Court or whoever.And we are going to look around and try to find the best case we possibly can to sue on behalf of and then actually move it through the court system. 

4:17 

So it's.What some people call like activist legislation.Litigation.Yeah, activist litigation.And yeah, so targeted activist litigation.And it is this strategy has been really successful in I think overturning a lot of Supreme Court precedents that were really problematic. 

4:39 

And so if you think of like Brown versus the Board of Education, the the case which threw out this concept of separate but equal education, right.So Thoroughgood Marshall was actually one of the lawyers involved ended up on the Supreme Court. 

4:55 

And so they they went around and tried to find the exact case in order to make their point about this particular.Yeah, like the perfect case that's going to, you know, prompt us to say, yeah, this is a bad law, right.And it happens really commonly in a lot of the cases that we know about, like for example, Loving versus Virginia, the case that overturned or got rid of or changed interracial marriage outlawed in some states. 

5:24 

So it it can be really beneficial, I think, to society to do this, but sometimes it's not so great, right?So there's activists on both sides, right?And we don't always agree with them.Yeah.Yeah.If everyone agreed on what public policy should be, then what would lawyers do with their free time? 

5:42 

All right, so this law that we'll talk about in just a minute called the Virginia Sterilization Act, bit of an ominous name.I think legislators have gotten better about hiding the intent behind laws through like fancy names and acronyms, acronyms of of laws that they passed. 

6:03 

So yeah, but this?Cut right to the point.We want to yeah, we want to show Sterilization Act of 1924.OK, so the folks involved in this movement behind this were in favor of this idea of eugenics. 

6:20 

OK, I know you are a very well, well read, well read expert on all things dealing with bioethics.So eugenics tell us what that is.Yeah, well, I did write a book on this, so I should know a little bit about it.So eugenics, this idea. 

6:37 

So there's positive eugenics and negative eugenics.So early 20th century.We're really Americans in particular, really excited.Hitler will take this up in a really aggressive way, but he got his ideas from American policy.So the idea was that we want to perfect our society through scientific means, so improve the human species. 

6:58 

Two ways of going about it.You can encourage the right kind of people, quote UN quote, to reproduce so that they will pass on.I mean, I think that they're not.This is way before, like the Human Genome Project.We don't totally understand heritability, but we do understand that kids tend to be like their parents. 

7:17 

And so and we're not quite sure like what traits are passed on.We're pretty sure, like intelligence and even like poverty could be passed on.These are.We would be very cautious about saying those things these days, but criminality is another one, right?Criminality.Yeah, sure. 

7:33 

So you know, these things are potentially heritable.So let's get like, and of course it's the exact people you imagine good, wealthy Protestant white people to reproduce.Let's encourage that, and let's discourage the wrong kinds of people from reproducing. 

7:50 

So poor people and black people and people with disabilities, like, let's, let's.Encourage them not to reproduce or forcibly sterilize them so they can't reproduce.Yeah, so this is there's a number of policies and laws that are being formulated by A and people today would say, oh, this is a pseudoscience, eugenics. 

8:12 

But at the time it was thought of as good science, right?This was not some like fringy science.This was the mainstream science of its day.I think that one thing that's really interesting about the topic of eugenics is exactly what you just said is that we often associate this with, you know, the Third Reich and Nazi, you know, purification of the the Aryan race type of evil, bad Nazi stereotypes, right. 

8:39 

But like you said, a lot of these ideas were originating in the United States.And we really actively, as a collective national consciousness, try to forget that a lot of those ideas came from the United States.So in this case, we've got Carrie Buck, who is an A woman from a really poor family who finds herself pregnant in 1924. 

9:09 

Carrie is from what we would describe as, you know, a broken home.Her mother is actually institutionalized, and it's a little bit unclear why she was institutionalized except for she was, quote UN quote promiscuous. 

9:28 

So.Yeah, well, and at this time, I've been reading some stuff recently, like not uncommon to institutionalized people too.So there's like this horrible history of institutionalizing people who, you know, had quote UN quote mental disorders.It was really easy to institutionalized women.Even married women, like husbands, could put their wives in asylums for almost no reason at all. 

9:50 

Just if they went before a judge and said, like, she seems crazy, please, you know, keep her here.And so there were lots of people institutionalized against their will who were not being benefited by being in institutions.So the fact that she was, quote, UN quote promiscuous, who knows what that means? 

10:06 

It could have just been some guy who was like, I don't want to deal with this woman, please take her away.And she had like, no autonomy.Over that situation exactly, and in a nearby area in Virginia, there was an institution that was known as the Virginia State Colony for Epileptics and the Feeble Minded. 

10:27 

So, oh, a colony.That's always like a great way to start.Yeah, there's there's at least half of the words in the the title of this that cause a little bit of a emotional reaction.Cringy.Little cringy.So the inner, the guy in charge of this, so Doctor Pretty Albert Sidney Pretty was a Superintendent of this colony and he was a hardcore proponent of eugenics and particularly the negative eugenics, meaning like we're going to sterilize people who he believes for whatever reason to should not be able to procreate in the gene pool. 

11:06 

And so his entire colony, this institution was built up around kind of as this with this idea in kind of the foundation of it.And so a couple things, interesting quotes from him.And so he was all in favor of institutionalizing women and then sterilizing them against their will. 

11:27 

And he was a childhood friend of the individual who, in Virginia, helped pass, write, and pass the legislation that legalized this.So the Virginia Sterilization Act author was a friend of this dude?Yeah, So they're in cahoots. 

11:42 

They're in cahoots.Well, they clearly have a similar view about about eugenics.And so he is quoted as saying that he would choose women or accept women into his organization, his institution, if they were, quote, immoral, if they were, if they had a unnatural fondness for men. 

12:02 

That's another quote.So promiscuity we've talked about.Natural fondness.Like, I just like the men too much.Too much.Yeah.And then actually there's a quote about a 16 year old who is institutionalized and end up involuntarily sterilized because of her habit of quote talking to little boys. 

12:26 

Talking to little boys, yeah.Oh no, as as a 16 year old.So, like, is there an implication that she was a pedophile?I think that that is one level of justification beyond what these guys felt like they had to justify. 

12:44 

She just talked to little boys too much.I I think that they wanted to sterilize this woman and for whatever reason.And so, I mean we talked about the gross history of American medicine, right?So involuntary sterilization is at the top of the list.OK, So Carrie Buck woman from a very poor family, very poor area of Virginia and she, her mom is actually institutionalized in this Virginia colony for the epileptic and feeble minded and and she gets admitted as well. 

13:19 

And so mother and daughter are both involved, institutionalized together.And there's actually a couple of pictures online of the two of them sitting next to each other like on this call.It's kind of a haunting image of these two.And at the time Carrie Buck was pregnant. 

13:35 

OK, unmarried.It's pretty clear and I think I think probably on uncontroversial, the father of the child was actually a family member who raped her while she was living in in the same home or in the home of another family member, so. 

13:53 

This is always what I thought is that the family that was fostering her when her mother was sent away, it was their son who raped her and got her pregnant and they didn't want to deal with her and blamed her right? 

14:09 

And so sent her away, right?I think it was actually a nephew of this family, a foster family, but definitely a family member.And she was definitely raped and definitely impregnated, and definitely then sent away.The tragic right. 

14:25 

So she is pregnant in this in this institution with her mother and gives birth to a child.And as part of the rationale for the sterilization that actually occurred to her later, they started doing intelligence tests, IQ tests, type kind of evaluations of the baby almost right away, which is. 

14:51 

Interesting.I already have such big issues with IQ tests and giving them to babies just seems like.Out of control.There are reports of them holding up like a coin to this child who's only a few months old and like moving it back and forth. 

15:06 

And whether the chat the baby like tracked it or not was then used as justification for whether the child was going to have a normal intelligence or not.Gross.Pretty gross.So unsurprisingly, Doctor, pretty at the at the Colony, thinks that Carrie Buck is a prime not just example, but a prime candidate for sterilization. 

15:32 

And not because of any reason that would benefit her, but purely for the benefit of the collective gene pool.Yeah, she's her offspring would be bad for society.So we must sterilize her.For the good of the whole.For the good of the whole. 

15:47 

Yeah.Yeah.I mean, I think we're compounding cringy upon cringy as we get deeper into this case, right?Yeah, not off to a great start.Yeah, it doesn't, it doesn't get better if we're being quite honest. 

16:02 

So in in a lot of ways, in some of these cases, particularly kind of from this era, the individual themselves really gets de prioritized throughout the entire process.She's so and she's like 16 at this point, 18. 18 OK, so she has just become an adult. 

16:20 

They probably did.They wait until that happened.I don't.I don't think that.They didn't care.They didn't care about that.Yeah.OK, so this works its way up through the the Virginia court system and eventually gets it all the way up to the Supreme Court. 

16:37 

And there's a couple of notable characters on the Supreme Court at this time.As somebody who kind of geeks out on the law, I really like the the makeup conversation of the Supreme Court as being important in the decisions that they make. 

16:52 

But a couple of folks on this Supreme Court you may have heard of, like, I don't know, Oliver Wendell Holmes.I've heard of him, yeah.Learn at hand is another justice who you may have heard of.And the chief justices this time was an individual named William Howard Taft. 

17:13 

President William Taft is the only former president to then serve on the Supreme Court.Interesting.Notoriously great president that everyone's definitely heard of Yeah that everyone is super excited is now making is now the Chief Justice of the Supreme Court. 

17:29 

Yeah, that isn't I.You know, I I don't think I really ever put that together that he would be the only one.Interesting because yeah he's often labeled as like one of the worst presidents of all time.Yeah not not shining example of presidential effectiveness or but he was also kind of a big proponent of eugenics and it I think it's easy to think that you this idea of purifying the the gene pool and and promoting certain characteristics is fringy that not a lot of people have that perspective but it really was really common a lot especially at the the more educated the more wealthy the more powerful quote UN quote folks in kind of society at that time it was a really common perspective really common view. 

18:21 

Yeah, I'll just add, just because I read a book about it, they're like 2 notable groups that are not eugenics proponents and it would be Catholics who are, you know?Very much a marginalized group in America in the early 20th century, in part because it for sterilization goes against their belief in you know that that this would violate their sort of moral sexual code of you know, not prohibiting children. 

18:51 

So there there's the Pope has said some things about this and it's and and there was actually some initially some interest from American Catholic Bishops.But, but when you add forced sterilization to the mix, you can't abide that as a Catholic, so good on them. 

19:08 

Although it's yeah, I will say there's some other things that Catholics are saying at this point where it's like, well, the idea is really good.You just the means are bad.So it's not like they're totally against eugenics on principle.You can read about more about that in my book and then I love it when you promote your book. 

19:24 

On Yeah, yeah, yeah.I got somebody's got it right and then fundamentalist.So right around this time we also get this liberal fundamentalist divide in American Protestantism.So whereas the Liberals are trying to keep up with like contemporary science and and like kind of the latest.Cultural things. 

19:41 

The fundamentalists are, you know, retracting and becoming more conservative and saying, you know, we can't, we can't believe this, like these new scientific advances and and a huge part of that too is just like.Are we going to go along with Darwinism?So I'll say that their reasons aren't actually necessarily all that great either for not promoting eugenics. 

20:01 

It's not very few people have, like, a principled There are some, for sure people were like, I don't think we should be sterilizing poor people.Those people exist.It's not like a principled stance by, like, a notable group.Yet at this point, so yeah. 

20:19 

Common perspective like so bringing up eugenics like in a cocktail party would not be frowned upon, right?People are talking about it and.Yeah, yeah.It's the science of the day, right?It'd be like today, talking about, I don't know, whatever, gene editing or something like that. 

20:35 

Sure.Like, well, I'd I'd say I I bet gene editing today is more controversial than eugenics was in the 1920s.Yeah, Interesting.Another interesting wrinkle to this case.Is that it?By some accounts the doctor Pretty, who is the the director of the executive of this colony actually heard about Carrie Buck through her mother who was already, like I said, already institutionalized there and basically solicited her to become an inmate so he could sterilize and use as as the example. 

21:09 

So at about 14 different levels, Carrie Buck, the person really gets subsumed into other people's.She's just this pawn in this bigger game of eugenics.So what do you think the Supreme Court decided is it is the Virginia Sterilization Act of 1924? 

21:30 

Does it violate the US Constitution?It doesn't.I do know there's this quote and I you probably have it.At hand better than I do.Something about 3 generations of imbeciles is enough.Oh, yes.All right, so I'm going to text.I'm going to text you this quote. 

21:46 

So this is from the Decision published in 1927.Buck versus Bell.This is Associate Justice Oliver Wendell Holmes Junior.OK, all right.So we have seen more than once that the public welfare may call upon the best citizens for their lives. 

22:01 

It would be strange if it could not call upon those who already SAP the strength of the state for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence.Oof, it is better for all the world if instead of waiting to execute degenerate offspring for crime, whoa, yeah. 

22:26 

Or to let them starve for their imbecility.Woof.Society can prevent those who are manifestly unfit from continuing their kind.The principle that sustains compulsory vaccination is broad enough to cover cutting the fallopian tubes. 3 generations of imbeciles are enough. 

22:44 

Wow, that is worse than I remember.So I remember that line about 3 generations of imbeciles is enough.But these other lines about sapping the strength?About executing them for crimes or letting them starve.So these are the options, right? 

22:59 

So either prevent them from being born or obviously we'll execute them for their crimes or they will starve from imbecility, right?Like as if the state has no interest in either of those things.Not happening.Yeah, bonkers. 

23:17 

That is wild.There are a couple cases that get cited kind of in law school and constitutional law classes.I was like, here's a really, really ugly quote from the Supreme Court, right.So there's a case called Plessy versus Ferguson, which is about the property interests of slaveholders, and it's it's really problematic. 

23:36 

But this one?It's hard to find a more disturbing quote from a Supreme Court opinion than this one.That is that's brutal.And am I right to think that we haven't like overturned this is this Duke, We don't have any states that still forcibly sterilize that ended way back in the 70s. 

23:57 

Yikes.But I don't think that it was ever overturned at the Supreme Court level, right, Right.So there's a subsequent case called Skinner versus Oklahoma that actually it doesn't directly overturn Buck versus Bell.But what it does is it basically renders it ineffective and it says that for sterilizations do actually violate. 

24:17 

Although let me I don't always say my opinion on this podcast about these cases, but it was wrong.I'm going to go out on a limb and just say, like, I think that this ruling was wrong.What was the most wrong about it, do you think?Let's start in the what are, What are some parts of the thing that you just read that are? 

24:39 

I mean, you had to stop a couple times and take a deep breath as you were reading it, so.Yeah, okay.So I mean, so let's set a little bit of context.So this is right after.I mean, this is the generation most of this generation had seen World War One and the the horrors of World War One and the number of friends and family members and countrymen who died in a brutal war, right. 

25:05 

So when they're, when they're talking about like the best citizens giving their lives, that's the context that they're talking about.And also so that that one other point of, yeah, the principle that sustains compulsory vaccination is broad enough to, you know, and then the quote goes on.That issue had actually just recently been litigated in the Supreme Court as well. 

25:24 

So that was actually also fresh on their minds.And so the idea is like, if we're asking someone to do something like vaccination, maybe we can ask them to do other things with their body.So.Right, right.There's there.Like the state has an interest.And I don't think this is wrong on principle the state, because I think there are times in cases of like epidemics when maybe the state really does have an interest in. 

25:45 

Forcing people to do things to their bodies they wouldn't otherwise want to do for the sake of keeping everyone else safe is like you make a small sacrifice, and with vaccinations you're not even doing that, but you might be asked to make a sacrifice on behalf of the whole to keep everybody else safe. 

26:02 

So I don't know that that's wrong in principle.Like where that falls, right?Like how what exactly things you're being asked to sacrifice and who gets to decide is?Of course, going to be controversial, but in principle, yeah, I think like most people would say that yes, we can ask people to sacrifice some things, even some of their bodily autonomy for the sake of everybody else around them. 

26:23 

So that's not wrong on principle.I mean, So what is wrong on principle?The idea that we're like, that America was being swamped with incompetence because of like people's genetic makeup that we just like cannot abide.Some people's intelligence not being as great as other people's is. 

26:41 

Really gross and and probably inaccurate, right?That some of these things that like poverty being inherited is of course not true.Some people still seem to think that, but not something you pass down genetically.Even if we have systems that keep people in poverty, the idea that, like, the only alternatives to sterilization are executing people or letting them starve to death seems like pretty extreme, yeah? 

27:10 

And then that they were imbeciles.I mean that's a word obviously we don't use anymore.It was, I think the technical, like medical term at the time, but Yikes.It just comes across as so, like such a gross way to talk about people.Yeah.And I think what's troubling for me about this case, I mean there's obviously a lot of things, but this idea that eugenics is so good and so scientific and such a benefit for society that we're going to use whatever means we can in order to achieve that. 

27:42 

And the people who kind of at the, the, the, the butt end of that are really vulnerable people also, people who maybe, I don't know.So we talked about this a little bit earlier that it's unclear and maybe it is a little bit clearer. 

27:59 

And it's not the case that Carrie Buck really wasn't mentally impaired in any way that she was actually, you know, just a a poor woman in a bad situation and got caught up in this other movement, this other the interests of somebody else. 

28:16 

Yeah, she was just incredibly vulnerable, right?She couldn't.Nobody cared what she had to say as as far as I remember, of this case, like she did.She didn't take the stand.She nobody asked.I mean, how is this true?I'm remembering this and maybe you'll get to this, but like some of the doctors who testified that she was. 

28:35 

You know, mentally impaired.Never met her.Yep.They relied upon reports.And there's this famous eugenicist at the time kind of the, the one of the people who were really was really advocating in this.His name was Harry Laughlin and so he submitted testimony to the written testimony to the court in this and afterwards so arguing for the the virtues of this law. 

28:58 

And afterwards he was reflecting upon his his motivations and kind of this Buck versus Bell being the importance of it.And he said that the decision in Buck versus Bell took negative eugenics out of the experimental phase into the the application stage, which is also pretty gross. 

29:17 

And after the Supreme Court case came down in 27, many, many other states followed Virginia's model and instituted legislation that permits sterilization against somebody's will.Yeah, like most states, right? 

29:35 

Most states had some sort of compulsory sterilization law.Yeah.So by 1947, so 20 years after that in the United States, the United States was forcibly sterilizing 10s of thousands of people a year.So I said earlier that Skinner was the case in 1940, forty 2:00-ish, I think 1942. 

29:57 

And it didn't specifically overturn Buck versus Bell, but kind of discourage those types of laws on the books.And then they kind of fell out of favor and state started to not use them.But some of them were never actually formally taken off the books until the 2000s. 

30:13 

I think the most recent one was maybe North Carolina.I'd have to double check.That, yeah, I saw that, yeah.Yeah.So even if we weren't doing it, but it were on the books, which is pretty bad.Yeah, when?You think so 1946 like this is like post Holocaust, like so we're really embarrassed. 

30:28 

So but do you know why we're embarrassed is because of all the crazy stuff we saw the Nazis doing that the world condemned.And then we start looking at ourselves and be like, wait a second, maybe these laws aren't great.Right.So they so all the eugenicists started calling themselves something different. 

30:45 

So it's not like eugenics totally went away at that point.But like it was like population science, so they all just like all the societies like changed their names.They just changed their names.Oh, it's such a sad part of like, it wasn't that they were all just shamed into shutting down.They just like kind of pivoted a little and change their names. 

31:03 

Yeah, it's almost like a rebranding, remarketing, right situation.So after about 1947, particularly after all the stuff in the Nuremberg trials, so the trials of the the Nazis post World War 2 and a lot of stuff that Joseph Mangala was doing his experimentations, the fervor for being publicly A eugenicist really kind of faded a little bit during that time. 

31:34 

Is my understanding.Is that yours as well?Yeah, I think.That's right.So it's not as if all the scientists just stopped doing the science, but like the public sort of support because the churches were all on board, like every everyone was on board.Like I said, there's there's exceptions to that, but people were on board, institutions were on board. 

31:52 

And I think while the science didn't totally stop, the applications were.Really cut back.And I think the public, like churches had eugenic sermon contests.Like those were less popular after World War 2.Yeah, particularly because we were trying to say look how bad the Nazis were. 

32:09 

They did all these terrible things were not that terrible.Yeah, plot twist, maybe we kind of were.An interesting little tidbit as well is that one of the lawyers at the Nuremberg trials who was defending the Nazis used Buck versus Bell in his argument. 

32:25 

Oh, that's embarrassing.Yeah.Yeah, so, but yeah, But if a defense attorney is, you know, defending somebody who's accused of eugenics and you in your Supreme Court have said eugenics is OK, like it's hard to make that kind of moral claim.Right.Yeah, absolutely. 

32:41 

So as we wrap up this case, so, so eugenics for sterilization, they don't happen much anymore, but I think there's maybe a different side.I would love to believe that it doesn't happen anymore. 

32:58 

Are you going to pop that bubble of mine?Well, yeah, I mean, there's been not at the scale, right?So there were, like you said, 10s of thousands of people every year.There's estimates around 60,000 in that time period.So for sure not at that scale. 

33:13 

And now it's the case that, and I'm sure you've dealt with some of these cases as I understand it, in I think every state in the US if you want to.Sterilize a person with an intellectual disability you have.You can't just make that decision between like the parents and the doctor. 

33:30 

You actually need to bring that before a judge.Is that correct that that's my understanding as well.I of course, we can't speak for every single state, but the the couple in a couple states that I've been living in and and doing this type of work, that has been the case that if there's an extra protection for that type of medical decision that requires court review and I think for good reasons. 

33:51 

Yeah, yeah, I I think this is probably a good idea.I think there's some who want to push back and say like it's overly burdensome to, you know, to do that.But and I'm not sure how often it's really happening, but I've certainly been part of cases and and and Ashley X, which we'll talk about in the series, was another one where, you know, this is a girl with an intellectual disability, had a hysterectomy. 

34:15 

And as far as I know, they never went to a judge to ask permission for that.It never comes up, at least in the reporting on the case, which is surprising because that is what most states would require you to do.So I'm surprised about that.But remember these cases and maybe you're going to get to this, but there were, there were some cases that came out recently of a physician who was sterilizing women at the border. 

34:38 

Yeah, so against their without their knowledge.So definitely against their will.And just not telling them, yeah, there's a really good documentary called Nomas Babies that is about the forced sterilization of migrants, particularly from Latin American countries into the United States. 

34:56 

And I think focusing kind of, you know, South Southern California area.I think it's kind of based in Los Angeles maybe, But yeah, exactly.Bringing light to that issue of women who are very, very vulnerable, right Maybe they're asylum seekers, refugees, people who are immigrating for a lot of different reasons and don't have anybody to speak on their behalf. 

35:22 

And so it's it's I I find it profoundly troubling that that I mean up until even I think the most recent reports of kind of use using some of this legislation to justify for sterilization without the knowledge of women. 

35:39 

I mean it was happening in as late as like the 70s and 80s in some places wrapping up.There's a a really interesting kind of kind of human interest aspect to this case later.So there's a a guy who works a, a professor who works in bioethics quite a bit, but also in law and a kind of medical history named Paul Lombardo at Georgia Tech. 

36:00 

Yeah does some really interesting work and he one of his fascinations or one of his areas of expertise is this case and he's written a book about it and a lot of articles about it and he actually tracked down and met Carrie Buck who is in her 80s and and he was able to interview her and kind of get her side of the story and and so yeah exactly. 

36:28 

And it's it's reported or or documented that Professor Lombardo was one of the few people who was able to attend her funeral in Yeah.So she lived until her 80s, remarried I think twice, remarried, obviously never had more children, and by all accounts lived a fairly normal life. 

36:51 

But for the fact that she couldn't have children.Wow.And how about her daughter?Yeah, so her daughter sadly died in childhood from complication from measles.But also there was somebody examined her later and wrote pretty persuasively that the child had no intellectual deficits, that there was no reason to believe that she wasn't anything other than, you know, a healthy child from the circumstances that she was from. 

37:20 

Yeah, yeah.So really sad.I had, I had, I don't know if this is true.I think I thought, I remember being at one point she was on the honor roll.Like they're like definitely no indication that she had any intellectual disability at all.Not that that would have made any of this like OK. 

37:38 

Right.But it's just another sort of like they didn't bother these these physicians did not care about Carrie or her mother or her daughter.And I I think it it kind of goes back to the point that is has been troubling throughout this case is that these individuals were really appropriated for other people's interests in a really gross way. 

38:00 

Yeah, but we've solved all of that.And sorry, maybe not.A problem Problem not solved, but.But I think like we said, I mean, if we're thinking about implications of this, it has gotten better.There are more rules.You can't just sterilize people against their will most of the time. 

38:19 

So in that sense, things have gotten better.We don't treat people with intellectual disabilities a whole lot better.We don't institutionalized women for basically no reason most of the time.Yeah.So, like, the systems have gotten a little bit better. 

38:35 

Institutionalization isn't like as much of a thing today as it was.Which isn't to say we can't involuntarily commit people for reasons that are sometimes suspect, but the sort of mass scale institutionalization of women who just like are immoral, not quite as common. 

38:50 

Today, the Virginia State Colony for Epileptic and Feeble Minded Individuals is closed.You'll be happy to know.But it closed in 2022 or 2020, yeah, yeah. 

39:08 

But it, it kind of changed it.It wasn't always the same thing.And the name definitely changed.So it opened in 20 in 1910, but even on the website for you know, announcing the closure of this institution, it doesn't use its name as it existed in carry bucks time. 

39:29 

So it's referred to as the Virginia State Epileptic Colony.They leave out the feeble minded parts little.That's pretty bad.I mean whitewashing of history.But absolutely.Have you been to this?The town where my husband's from has an institution that they've like reconverted into like a shopping mall. 

39:48 

No, it it what is it like a state mental hospital that yeah no I the the deinstitutionalization movement in like the 70s and stuff you know closing down mental hospitals has had such an interesting ripple effect throughout so many levels of our society, right. 

40:10 

So up in Michigan there's there's one kind of up towards what we call the thumb up kind of northeast area that has been almost closed and not closed and it really is like a lifeblood of.Well, I don't know if it's Lifeblood anymore.It was a a big employer in that county and like so. 

40:27 

So closing it has implications for not only the the patients and the people who work there, but also the communities that support and are kind of part of that broader community as well so.Yeah.At some point, we'll probably talk about Willowbrook and kind of what led to people's being people being kind of horrified by what was really happening in these institutions. 

40:48 

Yeah.So, all right, that's the case of Buck versus Bell.Thanks.That's a tough one.Yeah, that's a tough one.I don't have a bow to put on this one, Devin.Tough but important lesson in American history.Yeah, let's not whitewash this.We did a bad thing.Yes, it was bad and it was cited by bad people to do bad things and but I I think one thing that maybe is a good point to end on is there's a lot of really interesting scholarship on the eugenics movement in the United States. 

41:17 

Obviously you've had a little bit to write about, but also websites that have like tracking data and analysis and quotes from this case and and all of that stuff is, I think it's really an interesting part of American Medical history. 

41:35 

Absolutely.So we'll link to a bunch of that on the website.So check it out.So, all right, Buck versus Bell in the books.Done.Thanks for listening to this episode of Bioethics for the People.We can't do this podcast by ourselves.We've tried and it's not pretty. 

41:52 

Our team includes our research interns Michaela Kim, Madison Foley and Macy Hutto.Special thanks to Helen Webster for social media and production support.Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two and husband to one.Podcast art was created by Darian Golden Stall. 

42:09 

You can find more of her work at Darian Golden stall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.We love to connect with our listeners.All of our episodes can be found wherever you listen to podcasts. 

42:25 

Please like, subscribe and share and connect on social media. 

In this episode, Devan and Tyler discuss the life and afterlife of Henrietta Lacks. Her cells were taken without her consent and used in tens of thousands of research experiments. We discuss what has and hasn’t changed in research ethics.

Transcript

0:03 

Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics.And he's Tyler Gibb, who, according to his students, is best described as the goat of bioethics. 

0:27 

Good morning, Tyler.Hello Devin.So I'm up today.Yeah, I got a case.I'm excited.What case have you brought for us today?OK.Today we're going to talk about a case that I think has been pretty widely publicized and a lot of our listeners will probably have some familiarity with it. 

0:45 

OK, What new could I possibly say?I don't know, but I think it's still worth going through this case.Sure.All right.So the case is of a woman named Henrietta Lacks.Have you heard of her?Yes, Henrietta Lacks.I have heard of Henrietta Lacks. 

1:01 

OK, So what do you know about Henrietta Lacks?All right.Henrietta Lacks was a African American woman who was living or born in and around Baltimore, I think, in the 1930s. 

1:16 

Nineteen 40s.Ish is my memory and she unfortunately passed away due to I think an ovarian cancer, maybe cervical cancer.And there's something unique about her, her cell line, like the mutation that happened that caused the cancer that ended up killing her. 

1:37 

Something about it being able to be like regenerated and then doing tests on it.Something like that, using research.That's about as much as I know and Oprah cares about it.I was going to say people maybe heard about this because there was a movie about Henrietta Lex and her family that came out a few years back, and Oprah plays one of her daughters. 

1:58 

And so Oprah really cared.And and then this was inspired by a book by a reporter who wrote about Henrietta Lex's life and her afterlife.So it's become like a really popular story.And I think when we get into the case, you'll see why.It's become so popular and the kind of ethics issues that it raises, especially in research ethics. 

2:15 

OK, OK All right.Let's start at the beginning.Henrietta Lacks was born in Roanoke, VA, in 1920.We just celebrated her 100th birthday not too long ago, So there was a lot of kind of buzz around it A few years back.She was four years old when her mother died, and Henrietta's father took her and her nine siblings. 

2:36 

Lot of kids.Can you imagine?I don't even want to think about it.Turner, nine siblings to Clover, VA to live on their grandparents farm.So Henrietta grew up on a farm.She was described by her friends as tough but also warm and generous.And when she was 20 years old she married David Lacks and they had five children. 

2:57 

And after World War 2 there was kind of a boom in cities and they moved to Baltimore to find work.So in 1951, the 31 year old Henrietta.Told her husband that she was experiencing pain and she thought she had a knot in her womb. 

3:15 

That's how she described it, which was, you know, just causing her immense amount of pain.And she tried to tolerate this pain for a long time, but eventually it just became so overwhelming that she said I need to see a doctor, OK?How old is she at this point?She's 31, 31, OK, yeah.So she goes to see her local doctor, but her doctor runs some tests and he says I'm not really sure what this is. 

3:36 

I think you need to see a specialist.So her husband drives her to Johns Hopkins Hospital.Have you heard of it?Heard of it?Very famous hospital to have this not examined and this is like a 20 mile trip.So at the time this is kind of a big ordeal for them to go all the way to Johns Hopkins. 

3:53 

And why did they have to go to Johns Hopkins?Well, because they're black and Johns Hopkins is one of the only hospitals that has a quote UN quote colored Ward oh.OK, Yeah.So it's a public hospital and it has a separate ward for.You know, black people, which would have been common at the time and unfortunate this is where they, you know, have top notch doctors and where she can be seen as a black woman. 

4:17 

Great.Yeah.So, I mean it seems like a a good option.I mean, having being able to be treated at Johns Hopkins I think is pretty helpful.It's a great, great hospital world right now.Yeah.And today, it's a great hospital. 

4:32 

That's right.Yeah.All right.So they go and seek treatment at the famous Johns Hopkins, right?One that maybe not treatment yet, but just a diagnosis.Okay, She sees a gynecologist, Doctor Howard Jones, and he discovers a large malignant tumor on her cervix and he diagnosis her with cervical cancer. 

4:48 

Over the next eight months, LAX receives radium treatment.Which was, I know, I see your face.Radium was the premier treatment at the time.So this wasn't like, oh, we're going to give poor black people radium treatment.This was really what everybody would have gotten at the time. 

5:05 

Standard of care, standard of care at the time.Turns out radium is not great for your body.Yeah.Isn't that what Marie Curie taught us about?All right, so the treatment of the of the day, the treatment du jour is radium. 

5:22 

And how is it administered?Is it like injected or something?I don't even know what.Yeah, I actually don't really know either.Interesting.Anyway, OK, so bad.Cervical cancer, Standard of care.Is radium if it's kind of, well, you know, not that. 

5:38 

Like the stuff we give for cancer today is not toxic, right?So maybe better than radium, but still not great.Like still rough.She's receiving treatment at the time a surgeon, Lawrence Wharton Junior, takes 2 dime sized pieces of tissue from her cervix while she's under anesthesia as they're getting samples. 

6:00 

This was also common.The samples are collected from her without her knowledge or consent, but this would have been standard procedure at the time.You know, you collect samples and you give them to researchers working at Johns Hopkins.Because there is.A group of researchers who are looking at cell lines at the time. 

6:18 

And so you wouldn't have gotten consent for this then.I think I want to talk in a second about whether you'd get consent for it now.But these retrievals were standard.They happened to every patient, not just black patients in the colored ward.All patients.So. 

6:33 

So he gets these samples.The samples are processed by a woman in the lab named married Cuba.Check.She labels the tubes.Heela.HeLa for Henrietta Lacks the so the 1st 2 letters of her first and last name, which again standard naming procedure at the time. 

6:51 

We would not do this today.Don't label samples with somebody's name, patient names with patient names, but I I think that the HE, LA cells are really well known, right?I mean, people have heard of those, they're really common.And is it true that we didn't know that Heila stood for Henrietta Lacks for like a long time, right? 

7:10 

That's right.Because at some point, when, like, it became obvious that you needed to anonymize these samples, they started using a different name for her.They sort of gave her pseudonyms.So we didn't know her name for a while because they started calling the donor something else, not Henrietta Lacks, so something else that fit with HeLa. 

7:31 

They get these cells and it's like pretty obvious pretty quickly that they're remarkable.Unlike any human cell anyone had ever studied before, her cells didn't die quickly in the laboratory.They thrived and multiplied.So there had been some other animals where they We saw this happening, but it had not happened in human cells before. 

7:52 

Her cells were just multiplying gangbusters.That was the scientific term at the time.Just kidding.Gangbusters.But they just kept multiple.They were doubling every 20 to 24 hours, and they just weren't dying.And that.They just hadn't.They hadn't seen that before. 

8:08 

The researchers in this lab, Mary and Doctor Guy, had been researching this for decades, trying to find cell lines that would grow outside of the body.And they really couldn't do it for any more than like maybe one trial on the cells.So her cells are just ground breaking. 

8:23 

They and they see this almost right away.Mary runs to Doctor Guy.She says.We found what we've been looking for, an immortal cell line.They they they think that they could probably keep cultivating this cell line for eternity the way that they're multiplying, which is amazing. 

8:40 

Yeah.So it's so amazing and that it comes from a woman's cancer that, I mean, tragically she ends up dying from it.But it's amazing that that type of the mutation that in the cell line that she in the cells that she had creating the cell line. 

8:57 

I think, I mean, that's like a miracle of modern science, right?Absolutely.I'm not a biologist, so our listeners can correct me if any of this is wrong.But here's what I understand about cell lines.Biologists use cell cultures to grow cells in laboratories to do all sorts of basic science and clinical science to help us understand cellular mechanisms. 

9:18 

And also clinical applied research.So we test new drugs on cell lines to see if those drugs are toxic.So before we start doing things in even animals, we'll we'll test drugs on cell lines just to see what it does to the cells, because if it kills all the cells, probably not worth pursuing before Henrietta Lacks scientists are trying to grow cells in labs from human tissue. 

9:38 

But the problem is that these cells just tend to die pretty quickly and you can only run maybe one experiment on them before you have to start over on a new cell line.But Henrietta lack cells don't die.They just keep growing and replicating, and they're still doing that decades later.So we still have this same line. 

9:55 

Scientists already knew that cancer cells tend to grow more rapidly and stay alive longer than other cells, but they don't grow indefinitely.Eventually the telomeres kind of shorten and the cells die.And that's why we die.Apparently this is like all the kind of research into anti aging stuff is all on these, like telomeres in cells. 

10:13 

OK, Henry Lacks's cancer cells have some sort of mutation where they're just immortal.They just will not sort of.The telomeres are shortening, they're not dying.They keep going anyway.That's all I know about that.Don't ask me anymore about telomeres, but but that seems really useful from a scientific perspective because if you can use the same material to do multiple tests on right, so it takes out one of those variables. 

10:36 

So.Right.And so Doctor Guy is saying he's, like, holding press conferences.He says we found it, this amazing discovery of an immortal human cell line.And soon he starts getting phone calls from all of his, you know, buddies who are like, give us some of these cells, like, you know, just cut a few off and send them to us. 

10:51 

And he's like, yeah, OK, just just pay me for the cost of shipping them to you.So he's like, not really even making money off this.This is just so ground breaking.That he starts shipping these cells all over the world.So it doesn't take long before multiple labs have these cells going back to LAX, as you said, in spite of her treatment, she, her cancer really rapidly metastasizes throughout her body and she later that year at the age of 31 dies. 

11:18 

She's buried at in an unmarked grave, leaving behind her grief stricken husband and her five children.It's just tragic, right?So when she dies.George Guy asks her husband David for permission to perform an autopsy so he can collect more samples from Henrietta, but he doesn't exactly tell David why. 

11:43 

Anyway, so that there's like a watch the movie, It's really interesting.But their interaction is, you know, he kind of says I we need to know more about her cancer.Would you allow us to take some samples?He initially says no, but after some pestering, he agrees.To let them take more samples or to do the autopsy, A partial autopsy on her. 

12:01 

So this doctor at this point recognizes the value, scientific value, if not financial value of this cell line and wants more right.So the is the autopsy purely a pretext?Well, so they need to do the autopsy in order to get the more samples from her, right? 

12:18 

But yeah, but they don't need to do the autopsy.No, no, they don't need to do an autopsy.They they know why she died, right?Which is typically why you would do an autopsy.Yeah.Yeah.OK.So a little sketchy.They did get permission, but like, was it really informed consent?Doesn't seem like it, according to her family.Back to sort of like what is discovered about these cells doesn't take long for them to have a real medical impact. 

12:39 

So in 1952, her cells are used to develop the polio vaccine.And I don't know if you've heard of polio.Real big deal.Yeah.So long time avid listener of the podcast Grandma Nancy in Idaho Falls, ID, Survivor of polio. 

12:56 

Oh wow, yeah.Shout out Grandma Nancy.So she probably recognizes the value of polio vaccines, Yes.Yeah.So they set up a whole lab at Tuskegee University to use her cells.So they're so, like, amazing and so fast growing. 

13:11 

They have to, like, create whole laboratories just to keep her cells.Wait, Tuskegee in Alabama?Yeah, The Tuskegee.Yeah.Oh, interesting.OK, heard of Tuskegee as well.Yeah, yeah, we at some point we should talk about Tuskegee too, because other things happen there.They have a whole laboratory there dedicated to her cells and her cell line. 

13:29 

And not long after, there are other companies that start to help just sort of ship out these cell lines to researchers for a fee.There are folks making money off of her cells, mostly to get them to other researchers to be able to use.So since then he LA cells have been used in like countless studies.It's like impossible to over sell what her cells have been used for. 

13:49 

There is like almost no research that has used cell lines that haven't used her cell lines.They've been used to understand the effects of radiation, steroids, cancer, bacteria.They've been used and in 2001 they said they had been used in over 75,000 studies, 75, 1000 studies. 

14:08 

Yeah, and they're they were used to develop vaccines not only for polio, but HPV, COVID-19 cancer viruses to study the human genome, the effects of radiation and poisons, to improve cloning and in vitro fertilization and medications for HIV, Parkinson's, leukemia, the flu. 

14:25 

I mean just everything.Everything you can imagine.Did I read someplace that NASA used some of her cell lines and like, maybe there's cells in space or there were cells in space?Yep.Wow.So she's been in space.So the World Health Organization estimated that if you weighed all the cells that have ever grown from her cell line, they would be like 50 million metric tons of cells. 

14:48 

It's like, unfathomable to me, right?And just so we're clear, all of these cells contain her DNA, right?So you know if if anything is a genet is like an identifier of who you are as an individual, like your DNA code. 

15:05 

Is that right?Yes, Yeah, keep that in the back of your head because like, this will come up in a second.OK, So even though her cells are like making global headlines like everyone has heard of of he LA cells, at this point her family doesn't know anything about her connection to these cells. 

15:20 

Like until about 20 years after her death.And this is in part because they want to keep her identity confidential.And so like I said, they were using other kind of names to describe this woman, so her family didn't recognize kind of that.The other thing to know is that in 1966, scientists discovered that many of the cell lines they were working with, they didn't realize were contaminated by he LA cells. 

15:45 

Have you heard of this?Yes, I I yeah, a colleague of mine.I don't know if he's still at this is institution had like a 20 year research lab and everything and graduate students and then found out that whatever cells he was working on were contaminated and then it like blew up his whole research project. 

16:04 

Right.So this happened to a lot of researchers that they, it was, they sort of dubbed us the Heela bomb, that if your cell lines were contaminated with heela cells, you weren't actually researching the thing you thought you were researching, right?Because they were.You were researching her again.All over again. 

16:20 

So if you thought you were researching some other kinds of cells and they were actually contaminated with her cells, you can't be confident that the thing, the findings that you had were real findings, right?Like like ruined a bunch of research because people had just not been.I guess they were allowing these cell lines to be contaminated, so they weren't doing their diligence of whatever it takes. 

16:40 

Don't ask me what that means, Devin.Please tell us more about laboratory technique.I do.I do not know at one point.They say like the only way to remedy this.If we need to know if our cell lines are contaminated, we need to know like more about her DNA and but we know she has living children. 

16:58 

If we can get them to give us some of their DNA, we can test it against our cell lines to see if if they have been contaminated as well.It's like, so using the children is like a cross check, like a double check, cross check, yeah.Yes, the family was told so and but people knew They still remember Henrietta Lacks and they knew her family still went to Johns Hopkins to get medical care. 

17:20 

So somebody said just call him up and ask him to give us samples.And so they Hopkins, somebody at Hopkins calls family members, They say we want to test family members for the same cancer that Henrietta had.Would you come in and give us a blood sample?So they kind of lie to them that kind of like that was a lie. 

17:36 

That's not what they were testing.They weren't testing for cancer.They just needed their DNA to test against other cell lines.Wow.And what year is this?Ish.This is in the 60s, OK, 1960s.Yeah, Even though Hopkins tries to keep Henrietta's name anonymous in the 1970s, her name is sort of widely known by journalists and scientists. 

17:53 

In 1973, Babette Lacks, who is Henrietta's daughter-in-law, met a man at NIH at a cocktail party.They're talking, he says.I work with this cell line from a woman whose name was Henrietta Lacks, and Babette goes what My mother in But you know, she she died a long time ago. 

18:14 

And he says, yeah, yeah, this woman died a long time ago.Her name is Henrietta Laxon.She died of circle cancer.And Babette is like, Oh my gosh, yeah, I think that's my mother-in-law.And so this friend brings her a medical textbook to sort of show her who this woman was. 

18:30 

And all that these cell lines had accomplished.And in that medical genetics textbook, they open it up and there's a picture of Henrietta Lacks.Oh my gosh.Yeah, of her mother-in-law in the textbook.Of her mother-in-law.Yeah.And the family had, like, never known this and never gave permission for that picture to be used in this textbook. 

18:47 

Their minds are, like, blown at this point.And they're like, kind of rightly pissed.Yeah, absolutely.Can you imagine opening up a pic a medical textbook that I assume you know The chances of them randomly stumbling across the a medical textbook and finding this picture on their own is like 0 right? 

19:07 

I work in bioethics and I don't open up a lot of, like, random medical genetics.Yes.Never.Yeah, I don't have one, even on my shelf.I'm looking around.I don't think I have.I'm not stumbling across medical textbooks.Right.Like, why would you?Nobody would ever open a medical textbook unless they, like, needed it for a Med school class. 

19:26 

But yeah, opening up and seeing a family member.A deceased family member.Yeah, wow.Yes.So I think that there's a lot to criticize here about how Johns Hopkins went about this.First of all, Doctor Guy says that he didn't make any money off of these cells. 

19:46 

That they were never.And Johns Hopkins maintains that they were never sold or profited from, they were really used for, like, discovery and distribution and that they don't own the rights to the cell line.So that, you know, they don't have some sort of proprietary ownership of them but really gave them away.So HeLa cells are freely and widely used for scientific research. 

20:05 

So that's what they maintained.But here's what they say.Or here's what Johns Hopkins has said since the sort of book came out about this and people were like, what the heck, right?You know, her family never knew she.They never got informed consent from Henrietta.What's going on?Johns Hopkins sort of statement about this was, quote.Having reviewed our interactions with Henrietta Lacks and the Lacks family over more than 50 years, we found that Johns Hopkins could have and should have done more to inform and work with members of Henrietta Lacks's family out of respect for them, their privacy, and their personal interests. 

20:37 

Though the collection and use of Henrietta Lacks's cells and research was an acceptable and legal practice in the 1950s, such a practice would not happen today without the patient's consent.OK, Tyler, what do you know about whether or not we would do something like this today? 

20:55 

Is this sort of like just a hangover from the past?Today we would definitely get your consent to take samples from your body and use them in research.Is that true?I don't think that's true, Devin.It's not true, Tyler.I mean I we, I think we all pretend it's true and we wish that it's true maybe. 

21:12 

But this is the struggle that I have with this case and I think that what what we're going to talk about for the next, you know, rest of this episode is that there there's a couple of the kind of big cases that come out that have bioethics kind of written all over them that. 

21:29 

Get a lot of attention and and people start talking about and obviously this is one of them and often it's the case like Tuskegee for example where like the the unethical behavior was so obvious even obvious at the time probably.And we can say things like, you know, that would never happen today, but I don't think that Henrietta Lacks is that way, right. 

21:51 

I think it's more complicated.I mean, for sure they asking the family to come in and give blood samples under the guise that, you know, they were testing them to make sure they didn't have cancer was a like, blatant lie.And they knew that that was illegal at the time. 

22:06 

That was like not good ethics at the time.It's not good ethics today.Like you you you shouldn't that that's just kind of inconceivably wrong.But other parts of this really haven't changed all that much.So what do you know about the the common rule?The common rule it sounds, Is it just common sense? 

22:25 

Is it like the golden the golden common sense rule?No.You know the common rule in research ethics, right?Yep.So don't ask me to explain it right now.I mean it's it's the the the federal rules basically on how research that involves human subjects at any level has to happen, right. 

22:47 

So This is why institutional review boards or IR BS have have come into existence and and it's kind of their operating procedures at a federal level of how.To protect people from being exploited during research, right.Clinical research, right. 

23:03 

Yeah.So it's just our federal guidelines about how to make sure that human subjects research is sort of conducted ethically.And have you ever been on an IRB?Yeah, I have.I've been on a couple of IR BS it.It's super interesting.I find it super painful as well. 

23:20 

Yeah, yeah, you know, And we of course like, do ethics and know like what makes for ethical human subjects research.And even still, it is like pouring through protocols is a lot of work.I find it the same.I know people who love it, so good for them.Please be on an IRB if you love it, because most of us don't. 

23:39 

Absolutely.But it's important.So the common rule comes into effect after this guy Henry Beecher is combing through NH studies.So studies funded by the federal government on human subjects research.And he's like, holy moly, There are a lot of unethical research experiments happening, research trials happening right now. 

23:57 

And they're well known.The NIH is funding them.They the NIH like sort of reports on them.They're not secret.And so he was able to pull together a bunch of them.He in in the 60s, he releases this paper in the New England Journal of Medicine that's like, look at what we're doing. 

24:13 

And people are like, Oh my gosh, we need more regulation.So we had had research rules, ways to conduct research ethically since the Nuremberg trials after World War 2, because the Nazis did some very bad things.Yeah, we talked about that, that in other episodes, how if you get compared to Nazis, you're doing something wrong. 

24:33 

You're doing something wrong, yeah?And so, So Beecher was like in the 1960s, right?Mid 60s is when that paper came out, I think 66.Yeah, Did you know side note that that first he gave a presentation at a small conference?And that presentation turned into this paper, and that was actually given just outside of Kalamazoo, MI. 

24:54 

Oh really?Yeah, at A at a retreat.I can't remember the name of the treat, but it was owned by.It's owned by Michigan State now, but it was owned originally by the Upjohn Chemical Corporation.Oh, interesting.So.Yeah, it was like this like executive retreat and he went there and gave this paper kind of like a. 

25:10 

And if you look at the footnotes of this paper, it says like thanks for the feedback from my colleagues at this blah blah blah and mentions where he.First, gave this paper so Kalamazoo, MI, Michigan Shadow.No, I did not know that.That's a really fun fact.Go Kalamazoo.Side note, yes, good side note, OK. 

25:29 

The common rule kind of comes out of that like bombshell paper that Beecher produces.And we say, gosh, you know, we thought we were just these like great, we had these great ethical scientists.It turns out they were doing some stuff that's not so ethical, especially around informed consent.That's one of the big pushes like you have to people have to know that they're going into research if they're going to be human subjects. 

25:49 

But samples, biosamples, biospecimens are kind of different in that it's not clear to me or apparently the common role that they're they are people.Do biospecimens count as human subjects? 

26:07 

Right.They fall underneath that umbrella of protection.Or not?Or are they something different?Are they something else?Do you need consent to research on them?Are they somehow just so different?Like, clearly they come from humans, but that doesn't mean they are themselves human. 

26:23 

Yeah, I've heard.I've heard somebody describe this as like, like comparing it to fingernails.Like, obviously if you clip your fingernails and throw them away, you don't think of that as like a valuable part of your body, but it still came from your body, right?But how much?Genetic material or whatever. 

26:39 

How many fingernail clippings actually create enough of a person, a critical mass of a person, to get the same rights or protections, right?Yeah, well, and like if you found out that someone was collecting your cut fingernails and keeping them in a little plastic baggy, would that feel like a violation? 

26:59 

How did you know that has happened to me?No.Yes, that feels weird, right?Yeah, it feels really weird.Right.And we, we come across this sometimes when we're talking about people in regards to organ donation after death, right. 

27:16 

Some, a lot of people would be like, oh, I don't care what happens in my body, blah, blah, blah.But we do care what happens to our body.And we like, you know, if someone's collecting fingernail clippings or hair from your brush or even like your trash, right?Like there's something that feels like violating about that and. 

27:34 

If they're collecting my fingernail clippings and selling them on the Internet and making tons of money and winning Nobel prizes, I don't think I'd have feelings about that.I would definitely have feelings about that in 2017.So not that long ago, the common rule was updated and in part there was this really big push to start treating biosessiments differently. 

27:54 

So up until that point, anytime you go to the hospital and you have a procedure or you give blood, have you ever like had blood taken?Yeah.You know what?I, I, I my wife used to work at a blood collection center, so I'm well versed in the donation of blood. 

28:12 

And have you ever had a medical procedure where, like, some part of your body was taken out of you?I had my tonsils taken out.Does that count?That counts, yes.Tonsils are a part of your body, and now they're not.If that's ever happened to you, somebody could.A researcher could ask for some of those samples, just like they did with Henrietta Lacks, and start studying them for research purposes without your knowledge or consent. 

28:38 

Is it part of the consent that I signed, like as part of the procedure?Like, is it like part of the package of consents that I give before the surgery?Yeah.So often it is part of some sort of like, yeah, broader consent that, you know, you're consenting to it and then some languages slipped in there. 

28:55 

But I will say like you may not remember this because it maybe it was too long ago, but when you had your tonsils taken out, do you remember the nurse when she was going through the consent form spelling that out?Also we could use your tonsils in research.No, no, they would never say that so.I I got my tonsils taken out after law school while I was doing my PhD. 

29:13 

Oh, OK.So you, like you were probably wise enough to have noted that.But I didn't object to it.Yeah.So when we talk about consent for medical procedures, it's not like we just hand.We shouldn't anyway, just hand over a form and it's like of complicated legalese and go sign here like it's your Apple contract, which I don't think anyone in the history of the world has actually ever read, or at least no one I've ever met. 

29:36 

You know, you just sign it away.But really, with medical consent, you're supposed to make sure that the person understands what they're consenting to.And so even if the language about research has slipped into that, it's not actually gone through as part of the medical consent to the procedure.They're really concerned about you understanding kind of like the risks of the procedure. 

29:56 

They people wouldn't discuss with you, kind of like what might happen to your biospecimens afterwards.So if it's part of a consent, it's not part of that process, it's probably maybe it might be in like a form that you sign when you're signing like the 18 forms, right when you first get in there.Yeah, yeah. 

30:12 

And and I think if someone were to object, and I mean if it feels like you're on a train track, right.And.Going through the procedure like the pre op stuff and signing all the paperwork and then they do the procedure and then stuff gets sent to pathology and whatever.It's all part of this kind of train going down the track and if you were to object to that or I don't know if you wanted if I wanted to keep my tonsils or something. 

30:37 

Even just asking that question just kind of like throws everything off like people are like don't know how to.Handle that, because that's not the way things are done.Yeah.And and it actually is probably like pretty unlikely that we would let you keep your tonsils.Yeah, they said.No?I asked.That's gross. 

30:53 

Why would you?What were you going to do with your tonsils?I'm.Just going to put them in a jar on my my shelf.Oh, that's something my sister would do.That's gross.That's why Darien's the best.That's why she's the best.SO in 2017, there is this question.Should we be maybe getting better consent for biospecimens? 

31:12 

So I'm going to send you this table right before the changes.These were the options on the board.Will you kind of spell them out for our listeners?Yeah, OK, so on the left side of this table you sent me, it says models, so different types of consent and on the writers description, so starting at the top. 

31:35 

No consent.Individuals are not approached for permission for research use of biospecimens.So that was the case with Henrietta Lacks, right?You don't need consent.OK, no consent.General notification, which is defined as individuals are actively or passively alerted to the research use of biospecimens and offered an opportunity to opt out or opt in. 

32:00 

All right.And then blanket consent is?Individuals are asked to consent to all future research with no limitations or conditions.The next is broad consent. 

32:16 

Individuals are asked to consent to the collection and storage of biospecimens for future unspecified research, which will occur under conditions defined at the time of consent.All right, I think that one the best so far.Are we are we going to rate these?OK. 

32:32 

The next is categorical consent.Individuals are asked to consent to the collection storage of biospecimens for future research use, and are offered a checklist of options to stipulate by whom and what ways they can be used. 

32:48 

All right seems pretty good, too.Dynamic Consent individuals are provided with an interactive digital system that allows them to tailor, modify, and update consent choices as their circumstances change.And in response to specific studies, Wow, that gives a lot of power to the the donor there. 

33:09 

OK.And then finally study specific consent.Individuals are contacted and asked for consent for each research use.All right, so if you were in charge of writing the common rule, knowing what you know about biospecimens, which of these do you like best? 

33:29 

What's hard about this is that you're trying to balance like logistics and practicality, right?Obviously the most patient friendly form would be the study specific consent, where you are always being asked to use before any use.But also, that seems so burdensome. 

33:45 

Like, unworkably burdensome, right?Because we don't know, right?Imagine if they had to.You couldn't have imagined what he LA cells would be used for at the time that they were collected.You know, we wouldn't have all those things today if we had only sort of specified 1 research study they could be a part of, right? 

34:02 

And then, you know, maintaining even just like contact information with somebody for every single time use.Goodness, I actually kind of like broad consent.So broad consent, again, it's individuals are asked to consent to collection and storage for future unspecified research, which will occur under certain conditions defined at the time of consent, I think. 

34:24 

That feels like a good middle ground.Yeah.Yeah.And a lot of people advocated for that.I will say our friend Tom Tomlinson did some studies where he brought people together.And if you, it turns out, if you just ask people kind of categorically, hey, do you, would you mind if you know if a researcher used your biospecimen to do research? 

34:42 

And people will generally say, like, pretty overwhelmingly, yeah, that I think that's OK Like I'm not using that thing.I I like to be asked.But you go ahead.However, when you just give them an example of like 10 things that their biospecimen might be used for, like like 10 studies, people get a lot more nervous. 

35:01 

If you say, for example, Oh yeah, your specimen might be used in research that helps us do in vitro fertilization better in the future or helps us to perform safe abortions in the future.You know, if you're a person who doesn't agree with those things, you might say, Oh no, I would hate for my body to be used to advance that kind of science. 

35:20 

It gets more like, tricky if you sort of spell out the kinds of things because people just have a hard time imagining right.Your everyday person just doesn't imagine what their biospecimen could be used for.So he had, like, kind of compelling evidence to say, you know, people actually aren't as OK with this as you might think. 

35:35 

Yeah, interesting. 2017, that was all ignored.None of these consents were.They didn't go with any of this.They kind of went with like a general notification, unless you had a biospecimen that had a complete like DNA profile, in which case you would need consent for that.Oh, interesting. 

35:52 

So if you were going to collect like the whole genomic information about the that because it's so easily tied back to you, then you would need like stronger consent.But in general, we're just doing like general notification at this point.So you don't you're you're kind of consenting in the sense of like it's part of it might be part of the paperwork, but you probably never noticed it, yeah. 

36:08 

And is opt in, opt out options mandatory or is that kind of like as?The researcher wants or yeah, I yeah, I don't know that there's any like really specific rule I know today.Like if you get biospecimens, you don't have to go back and get consent to do research on them. 

36:26 

Or if like you get something that you did consent research for, you can use it later for secondary research.You don't have to go back and get more consents for it.So there's all sorts of like it just doesn't count as a human subject, right.So you get the waiver for these bio specimens, unless of course they so clearly with their whole genomic information tied back to the person. 

36:44 

Interesting, huh?Yeah.Wow.So I I think based upon that I don't know that Henrietta lacks, well, obviously, like the the manipulation and the deception aside, I don't know.It would be much different, Yeah. 

37:00 

I'm not sure it really would.I think that that could happen today or at least the collecting of her specimen to use.We wouldn't call them he LA cells because that is not like anonymizing them well enough, right.So we would assign like a number to them probably that couldn't be tied back to any living person. 

37:15 

So and that's the requirement is you have to de identify them.So not just anonymous, you have to actually de identify like any markers that could be tied back to the person.And if you do that, then there's not anything more you need to do, yeah.So I'm not sure what would be different today.Yeah, interesting.Interesting was, was that point made in Oprah's documentary? 

37:35 

It wasn't a documentary.Oh yeah, it was like a like a fictionalized.But they didn't talk about that, the common role, you know, I've actually never seen it.Is that embarrassing.I've seen like, clips of it.So our research assistant pulled clips of it for me, but I haven't, like, sat down to watch the entire thing.All right.We'll do that. 

37:51 

We'll do that, yeah.Sorry, Sorry Oprah, I love you but I didn't watch it.So just as a footnote to this episode, I want to say that Henrietta Alexis family has currently is in a lawsuit with one of the multi billion dollar biological companies, Thermo Fisher Scientific. 

38:06 

That is been what they claim, like enriched by Henrietta Alexis Cells.There has been a foundation set up for Henrietta Lacks, and her children now have had access to funds that have been raised for her family.But they're they still think that this one company has been unjustly enriched by using her cells and that they should have some say over her cells and access to that fund. 

38:27 

So there is a lawsuit happening right now, so we'll have to wait to see what happens.It was filed in August of this year.Oh, so just recently, yeah, yeah.I saw a traveling exhibit, I think it was a grandson or some family member was kind of touring small small town libraries and doing like like exhibitions and stuff of family mementos and things that we hosted him here. 

38:53 

And it was really great.It's really lovely.So such an interesting, complex story with a lot of layers that people have.I think maybe.Really strong opinions that aren't necessarily as informed as we would want those opinions.Well, I often hear this is like, oh man, remember way back when when they didn't care about informed consent and it often gets cast as like an the problem of informed consent. 

39:16 

The big ethics issue is informed consent.And it might be, but it hasn't changed.Yeah, interesting.Great case.Great case.Devin, thanks Tyler.OK.All right.See you.Bye, bye.Thanks for listening to this episode of Bioethics for the People.We can't do this podcast by ourselves. 

39:31 

We've tried and it's not pretty.Our team includes our research interns, Michaela Kim, Madison Foley and Macy Hutto.Special thanks to Helen Webster for social media and production support.Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two, and husband to one. 

39:48 

Podcast Art was created by Darian Golden Stall.You can find more of her work at Darian Golden stall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.We love to connect with our listeners.All of our episodes can be found wherever you listen to podcasts. 

40:07 

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On this episode, we delve into one of the most influential cases in bioethics, mental health to discover whether healthcare providers have a “duty to warn” patients of potential violence. Devan and Tyler explore the Tarasoff case's historical context, legal significance, and the enduring ethical and practical implications it holds for the field of psychology, mental health, and the broader legal system.

Transcript

0:00 

Hey listeners, just a heads up, the case that we talked about today involves interpersonal violence and maybe distressing to some listeners.Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics. 

0:24 

And he's Tyler Gibb, who, according to his students, is best described as the goat of bioethics.Hello Devin.Hello, Tyler.Good morning.Good morning.So I've got a case to talk about today. 

0:41 

Awesome.You're up.So what's the case, Tyler?OK, so here's a question.When we're thinking about kind of the big cases in bioethics, there's one that has to do with confidentiality, right?And I think that that's one that we're going to talk about today. 

0:57 

So can you name the case that is kind of the Seminole bioethics case dealing with confidentiality?So I think of Tarasov.Yep, Tarasoff.Good, I I should get a prize.I get AT shirt. 

1:14 

So what do you remember about Tarasoff?OK, it's kind of a fun last name.Yeah, and and a very unfun case.So not a fun case.Yeah, I it's not 1 I teach on, so it's not one that I'm super familiar with.From what I remember, it's about a young woman who is murdered by a young man. 

1:36 

I think they're both in college.And he had at some point told, I don't know if it was a therapist or a school counselor that he was.I don't know if they had dated or if he was just sort of infatuated with her.But he had made insinuations that he would harm her. 

1:53 

And he did.And he killed her and her family, I think, sued the college or the therapist.Wow.OK.I apparently don't know a lot about this case, but saying that, no, you're doing great.You're doing great.That's that's all of those things are. 

2:08 

Mostly true, which I think is is pretty good for somebody who doesn't teach on the case.OK, so you're right.So it's the the case about a young gentleman named Prozenjit Podar.So that's how I'm going to say his name. 

2:25 

I know that's probably not right, but Podar so he was a graduate student at the University of Berkeley in 19686768 Ish.So that's the time frame, right?So I can imagine being a college student at Berkeley in 1960. 

2:41 

Seven 1968 may have been a different experience than I.Probably at BYU, I'm thinking, yeah, yeah, so I'm sure that we had, we we had good times in college, but just probably a little bit different.So Padar is a graduate, a student in, I'm not exactly sure, his field something about electrical engineering or electrical design, something like that in the STEM fields. 

3:05 

He is living in the International House because he's from India.And it meets, becomes, you know, crosses paths with another student who is an undergrad and her name is Tatiana Terasov.Sometimes she's referred to as Tanya, but Terasov. 

3:20 

So they meet in a folk dancing class in Berkeley in 1968.Ish.OK, so you're right.He becomes infatuated with her, and there's a little bit of, you know, maybe disagreement.We're not quite sure exactly whether there were feelings on both sides or whatever, but over the course of the semester leading into the winter break, they interacted more during this class, maybe saw each other socially. 

3:46 

He definitely thought that there was more to the relationship than she did.This all comes to head and for some weird reason, what happened at New Year's Eve gets referenced in almost every account of what happened.As if it's like this little golden nugget that explains everything else that happened.Which obviously isn't the case. 

4:02 

But New Year's Eve?They shared a kiss.OK, so this was fuel to Podar's infatuation.He thinks that they are in relationship now.She is continuing to date other people and rebuffing his advances for more intimate relationship. 

4:20 

So yeah, so he thinks that this kiss is a big deal.She does not.There's hurt feelings, Yeah.And I think that it's important to note how interesting intercultural communication can be, particularly in situations where there are, you know, intimate romantic relationships like the cross coding that has to happen interculturally is just, I mean, it's almost impossible to not screw up in really important ways. 

4:43 

Right.Oh, so is is he from?Yeah.So he's from India.Yeah.So he's a international graduate student on a on A student visa.There are references in some of the some of the stuff that I read in prep for this that references like what cast he's from or what part of Delhi his family is, what village he's from, as if that was also kind of explanatory in some almost racist kind of way. 

5:04 

But yeah, so he is an international graduate student and meets this woman, falls in love with her.She's not reciprocating it.So now we're in, you know, January ish.He continues to kind of obsess about her and says some concerning things to his roommate. 

5:20 

And his roommate recommends that he seeks out treatment or counseling or get in touch with the healthcare system in some way.That's pretty amazing for the 60s.I don't know what's going on with therapy in the 60s, but that seems like a pretty like savvy on his roommate's part.I I think that we would be impressed with that response from a roommate right now, right? 

5:40 

Yeah, no offense to college kids.It was a good move on the roommates part.At the same time, we find out later that PODAR was stalking.I think is a fair description of Tanya contriving ways in which their paths would cross and they'd talk and and he would actually, I'm not. 

5:55 

I'm not sure the technology at this point in the 1960s, but he was secretly recording some of their conversations and then obsessively playing them back like at night and trying to figure out why, what he could have done differently to make her fall in love with him.Or maybe she was giving sub subtextual cues that he should be picking up on. 

6:15 

Right.So kind of not a dark not great.So he does, which again this is, this is AI think probably an unusual set of circumstances in this time frame.But not only does the roommate recognize there's some mental health issues but and recommends that he go see somebody about it. 

6:32 

But he does do that.He goes and seeks out treatment and starts being seen at the, I think, the student Health Center by a Doctor Moore, who's a psychologist, and he diagnosis him for the first time as having paranoid acute schizophrenic reaction to to this thing. 

6:49 

So seems like an appropriate diagnosis.And this is where I think the case is really interesting.So Tarasoff is a kind of a 12 Tarasoff 1, Tarasoff 2 case in the ways that they're taught.But that's kind of more of a quirk in our legal system rather than a difference of kind of doctrine that comes out of this. 

7:08 

OK.All right.So far so good.You with us.OK.So I think everything that you described kind of alliance with kind of the more more details that I'm fleshing out.So.So PODAR is involved in treatment with Doctor Moore, OK.And this is important because Doctor Moore gives him his diagnosis and also towards the end of their, I don't know if it was like 6 weeks of weekly therapy or what their kind of treatment protocol was. 

7:33 

But towards the end of that Podar expresses to Doctor Moore that he has feelings of violence and wanting to kill somebody And because they had been seeing, seeing each other.It's an it's interesting that this is also something that's really emphasized in in some of the really detailed analysis of the case is that in the session where he expressed the violence, the violent urges or the intention to do violence towards Tarasov, that he actually doesn't name her. 

8:02 

But Doctor Moore, because they had seen each other for a period of time, is able very quickly to identify that he's talking about Tarasov.A lot of the kind of off the cuff, really quick and dirty summaries of the case paint Doctor Moore in kind of I think in an unnecessarily negative light. 

8:21 

So a lot of them will kind of tell the story of well, tear us off as the case of a psychologist was told about this violent urges or intent to do violence did nothing patient.The client or the patient goes out and and actually does the thing that they said they were going to do. 

8:37 

Isn't it terrible?The doctor should have done something right.So that's kind of the basically.Yeah, that's that's how I usually hear it, right?Like he should have.He should have tried to intervene and he didn't.Like a lot of these cases, as we start to get into the the details, into the weeds a little bit, it's not really quite the story, it's a little bit of a different story. 

8:55 

So Doctor Moore actually recognized that this person was in danger.And at the time the tools available to him were a petition insert or a 5150 is what they call it in California.So what do you know about that?Is that a hold? 

9:11 

Is that where you like, can hold somebody involuntarily?Yes, exactly.So it's an involuntary commitment or involuntary hold of a person for psychiatric reasons.So usually they're in some sort of psychiatric emergency, and the general civil liberties that we all enjoy are suspended for a discrete period of time in order for this, to this person to be made safe. 

9:37 

Yeah.So that's a big deal, right.So he, when he said this, the the psychologist said that is such a audacious claim or you're clearly in some sort of emergency situation.So, so much so that I'm going to commit you against your will, right to a hospital setting.Another interesting detail that is often overlooked is that tear us off at this time during this week or, you know, maybe it's spring break. 

10:00 

I don't know.But she is actually on vacation.Doctor Moore knows this.They talked about this, I think because Podar had had told her that she's on vacation in Brazil and won't return for a period of time.So she's out of the country.And, you know, if we're jumping into Doctor Moore's mind, he has a patient who is clearly not doing well. 

10:20 

He has the tools available to commit him and the person who's most at risk is in a different country.So Doctor Moore, what he does is he writes out a report, writes out a letter, sends it to the campus police and says this is the patient, this is the name, this is the threat that they made. 

10:37 

This is how I'm interpreting it.Please pick him up and we'll do this petition insert and you know things will be good, reasonable.Reasonable.So he doesn't commit him when he says the thing, so he lets him leave and then says later No, I think that was such a big. 

10:53 

Scary statement that I need to have him committed.The wrinkle there was so he lets him leave the hospital and then Doctor Moore, who I think was at a quite junior healthcare provider, talks to his supervisor and the supervisor informs him of may, maybe his obligations or ways to think about it. 

11:13 

And then he sends a letter to the police asking them to go pick him up.I see.OK, And this is actually, I think it's a Friday leading into the weekend.But again, Tanya's out of the country, so direct threat is probably mitigated in the minds of Moore, right? 

11:29 

Oh, also in the letter, Doctor Moore says that Podar actually is really sophisticated in in masking his symptoms.So he actually says in the letter to the police, he's going to seem very rational, very reasonable, right. 

11:46 

But that's just part of his kind of pathology.So he gives him a heads up like he's going to seem OK, but I need you to know that he's not OK.He's made these threats.I need you to We need to do this again.I feel like this doctor's kind of nailing it, right?Yeah, yeah, seems appropriate. 

12:02 

Police go.They make contact with Podar and just as the doctor described he's very reasonable makes good explanations about what he said and how it wasn't that big of a deal promises to to not make any contact with her.So they actually, I think they bring him into the the campus police office and question him and interrogate him and he is able to satisfy the police officers that he's that he's OK that he recognizes that it was he shouldn't have said that he doesn't really believe that so he so he talks his way out of this and the police let him go. 

12:36 

Oh no.So is that in their authority?I guess I don't understand how these things work, but gosh, you'd think that.They should just commit him because that's the thing that they were instructed to do.But maybe they have the authority.Yeah, I think that they had, they have some professional prerogative too, right. 

12:52 

I mean, they can say, you know, I don't think that this guy's actually described, you know, he's not presenting in the way that he's being described or you know, I don't, I don't know the details.Yeah, but they're not psychiatrist.Come on, come on.Police.So that's what happened.Doctor Moore probably heard later that the police picked him up and didn't commit him, obviously, or didn't bring him in for the petition insert. 

13:15 

I can understand if he had some feelings about that, particularly because when Tanya comes home from vacation, Podar finds out that she's home.He actually had made friends with her brother in order to keep tabs on her and so he knows that she's back.They have a the Tarasov's own, a house outside of Berkeley someplace. 

13:35 

He knows where it is through the brother and goes.Tarasov's mom is there and knows about Podar and knows that he is a threat, tells him to go away.He leaves, gets a weapon, comes back later when Tarasov is there and ends up murdering her.Yeah.He is distraught, calls the police confesses and you know is taken into custody and charged. 

13:58 

So what what happens in the criminal process And so he so as an international you know someone who is here studying on an international student visa there's all types of interesting well maybe not that interesting.It wrinkles about as far as like immigration status and and you know, charging. 

14:15 

Sure.Interesting to another kind of podcast, but maybe not so much to our.I think it's kind of interesting.We'll move on.One of the interesting things that happens is that he gets charged criminally right and actually enters into a plea deal.And part of the plea deal is that he gets deported and can never come back. 

14:33 

And it's kind of a mess how justice kind of fell on its face in prosecuting him.So they deport him, presumably so he can be tried in India or just just get him out of the country.Part of the plea deal and we don't know the details of the plea deal, but part of it is that, you know, he can never return to the United States. 

14:52 

If he does, he will be.So basically they put on suspension around the hiatus, suspended the charges.If he ever comes back to the United States, then they charge him.OK, well, that seems like, yeah, a miscarriage of justice there because he murdered someone.Yeah.So he's initially charged with Murder 2, murder in the second degree, which is kind of like more like the it's not premeditated. 

15:13 

It's more like a crime of passion type of situation that actually got downgraded to manslaughter and then yeah.What?I mean, he made threats against her and then got a weapon and then killed her and that's not premeditated.I don't know.Maybe there's it's stickier in the case itself, but I don't know. 

15:29 

I'm not going to sit here and try to defend that one.That's what happened.You represent the law, Tyler, Don't you represent?Because I'm fascinated by it does not mean I am in the position to defend it.Fair enough.Fair enough.Understandably, Tarasov's parents are upset about this whole situation. 

15:45 

OK, And so when they find out that not only did Podar see a psychiatrist, but he actually told her psychologist he actually told them of the threat.And then still there was no no protection that your daughter still died, despite him saying what he was going to do, right? 

16:02 

So they file a lawsuit against the healthcare providers, claiming that they actually were negligent in not adequately taking this information and doing something about it, even though even though Doctor Moore did really right.Yeah, but he didn't inform them is is that what they would have wanted? 

16:20 

Right.So this is the question of confidentiality is, you know, he's bodar was his patient, so he has to keep that information, you know, their conversations confidential presumably.Would this be an exception?At the time, I presumed that there's there's no precedent for this. 

16:35 

So you are supposed to keep those things confidential.And they're saying no, you should have informed us so that we could have protected her or her, so she could have protected herself.And so this is so this is where the the bioethics gets really kind of interesting about this.So we have this ethical obligation or professional obligation to not only be the type of person who is able to be worthy of the trust of our patients, right? 

17:00 

But also to protect the things that are said in those type of intimate, some people would say, like sacred relationships, right?So there's a couple of other types of relationships that we recognize as being sacred.And without really, really good justification, we can't violate that confidential kind of cone of silence, right? 

17:22 

Yeah, like priests, right?So you confess something in the confessional booth.The police can't then go.Oh, you have to tell us what they said or, you know, I can be confident that if I tell my priest that I, you know, did something wrong and I want, you know, religious absolution for it, that he's not going to also go and tell, you know, my neighbor or the police or the newspaper. 

17:42 

Right.So.So he has some professional obligations as part of his duty.And I, as a patron or a client of that, can rely upon that confidence in order to achieve some other greater good, right?Right.So we wouldn't tell our psychiatrist or psychologists things if we thought that they were going to use it against us. 

18:03 

So it it sort of opens up space to have real conversations otherwise that therapeutic relationship.Yeah.And so that applies to mental health professionals as well as it applies to to physicians and nurses and people who are in that type of care relationship as well.But there's not a whole lot of those relationships that are kind of by public policy or by statute in some situations to be protected. 

18:26 

So we think of patron or a parishioner, priest, parishioner, clergyman, right.So the sanctity of the clergy, Dr. patient relationships and then lawyer client relationships is another one, right?But outside of those, there's not really a whole lot of situations in which we can really be confident that our conversations are or going to be held private. 

18:50 

Right.So that's like the Holy Trinity of confidentiality there.But right, If our students tell us they committed a crime, I might be responsible for reporting that, in fact.And not only would you have, like an an ethical or a professional obligation to do that, in in many states if you didn't do that, you could be punished for it. 

19:09 

You could be sometimes criminally punished for not having done that.Yeah, yeah that's true in Texas about anything involving and sometimes it's identified as like against children or against elderly for example, elderly folks.But it's a so mandatory reporter is the the term that we use often. 

19:27 

OK, so that so this is the question.So we have these ethical obligation that is in intention at least maybe not in direct conflict with a a public good, a benefit of, you know, something in society that we want to protect which is avoid violence against vulnerable people. 

19:45 

So we have this tension.And so the the ethical question, you know, in my mind is what are the limits of that professional obligation?OK, Is it always and forever and there shall not be any violation of this ethical principle?I don't know. 

20:00 

Those are tough to justify in most cases, right?There's usually exceptions at some end of the spectrum.But this is really a question of where do we draw the line.Yeah, you have to drop somewhere.Like I can't imagine anyone saying, like if I, if I had a patient who was admitting to, like, harming their own child, right, continually, I don't think I could stand by and, you know, continue to let that happen because I have a professional obligation to that patient. 

20:28 

I mean, at some level you have to protect other third parties.But, but, but it's this balancing act, right?And so part of this case was the.The fundamental question in my mind was.Is this type of threat against this person said in this way and in this context is that something that not only is it OK if you do it, if you if you disclose that, but in this situation you must and to not do that would put would mean that you did something wrong and you could be punished for it, right. 

21:03 

So that's where it switches from a a recommendation or it's permissible.It's OK if you do this to.Thou shalt do it.And if thou doesn't, thou shalt be punished.Right.Right.And and so, like in my clinical practice, that's the difference of, you know, if you do this, like if you report that your elderly patient with dementia shouldn't be driving you, the law will protect you from somebody counter suing you for reporting that, right? 

21:28 

So like you are legally protected if somebody comes back and sues you for that disclosure versus if you don't disclose that to legal, you know parties, you will be prosecuted.So like the, it's either a protection from the law or like a mandatory reporting obligation. 

21:45 

And those are pretty different.And and that and that's exactly right.That is where the kind of the crux of this case, or at least where the the Teresa family, that's what they were claiming is that Doctor Moore, even though he did some a lot more things than we kind of give him credit for that he didn't do enough that he actually had a duty. 

22:05 

Not just to do all these other things that he did, but he actually had a duty to warn the potential victim.And so that's where that term, duty to warn comes is from this case, Yeah.Yeah.And So what are the parameters of that?Because it, you know, yeah. 

22:21 

So I'm sure you'll get into this.But when do you have a duty to warn?How specific does the you know claim need to be?How do you born?So this case was decided in 1974.OK, so this is what we call Tarasoff one, which implies that there's going to be a follow up and the waters are just going to get muddier. 

22:42 

But we'll we'll wade through them together.So Tarasoff one decided that yes.So the District Court dismissed the Tarasoffs and said no, there's no that this was not a case of negligence.The Doctor did enough.Maybe he didn't do everything he could have, but he did enough. 

23:00 

He discharged whatever obligation he had and not disclosing this other information was not he was not liable for that or the damages that occurred because of that failure.Blah, blah, blah blah.OK, so so the District Court that's that was their finding. 

23:16 

They found against.They decided against the terrace offs.They appealed it to the appeals court.They decided against to terrace offs.But they, you know, gosh darn it, they are nothing but persistent.And they appealed it to the Supreme Court of California.The Supreme Court of California ruled in favor of the Tara Sauce. 

23:34 

And they said yes, Not only so he, Doctor Moore may have done all of these other things, but you're right, he had a duty to warn the potential victim because the person was easily identifiable.And so he gave a a list of kind of criteria that must be satisfied in order for this duty to apply. 

23:54 

But you know, that was the that was the decision that, yes, Doctor Moore did not do enough.He actually had a duty to warn the potential victim.OK, so so tear us off herself.Yes.He should have tried to get in touch with her.Yep.And if and failing that, then he should have done something, You know, contact her parents or roommates or whatever, you know, done something more to warn her, OK? 

24:17 

So this case actually gets, it gets a little muddy and way too much in the the the legal weeds of it, but actually gets there's a rehearing of this case, so it gets remanded and then there's a rehearing.And so in 1976 it comes back up through the system, back to the Supreme Court and kind of a a redo of the original 1974 case. 

24:38 

So this is Tarasov 2.OK.The the remix.The remix two point O.And they they rule again, they find in favor of the terrace offs that there was a duty, but they kind of tweak the duty a little bit. 

24:55 

So they don't say that the doctor had a duty to warn.It actually says there's a a little bit broader duty, which we're going to call a duty to protect and war and warning somebody can be part of protecting, but also identifying the police officer can be part of protecting. 

25:12 

Does that make sense?That OK warning somebody is part of is 1 component of a broader duty to warn or to protect somebody.So does that mean so just so I'm clear that he had more obligations in tears of two or less, meaning like warning her would have satisfied the criteria to protect. 

25:36 

So there could have been multiple ways to protect Warren, might have been one of them.Or Warning was not quite enough to protect her.Great question.What the court decided was that they're they're kind of setting aside the, the Warren aspect and they said doctors in these situations, physicians, healthcare providers have a duty to protect the potential victim. 

26:00 

There's a lot of different ways in which we can protect somebody.So we can call the police, we can do involuntary commitment, we can do maybe a couple other things.Or also, part of protecting would be to warn the potential victim so they could actually make decisions about how to protect themselves further. 

26:17 

So what Doctor Moore failed to do, so he had an obligation to protect the potential victim.He could have discharged that duty by warning her, or by talking to the police.Or maybe talking to the police and warning.OK, that makes sense. 

26:32 

Yeah.Yeah.But he he it sounds like he did satisfy that if he tried to commit him and told the police to go get him right, isn't that that wasn't enough?Right.Yeah.So it was enough.So, you know, again, this kind of gets into the weeds of the league, the legal technicalities of it, But they found that there was this duty and so they created this legal precedent that there was this duty. 

26:54 

And then whether or not he actually satisfied it or not, kind of got remanded.And then there was an out of court settlement and other stuff but the legal doctrine of a duty to warn.Had been established in 1974 Terasov one and then it got slightly modified into a duty to protect in 1976 in Terasov 2. 

27:17 

OK.I've never heard of a duty to protect just to say like I've heard of this duty to warn.Right.So that that's the one that sticks in my mind.I've never heard of a duty to protect that one didn't didn't have the sticking power, at least to my mind.Is that.Do you think that's right?Kind of. 

27:32 

But what also gets happened is they they get muddled together and they start to be described as the same thing, whereas they're actually a little bit different, you know, one's kind of a subset of the other one.But sometimes it gets bought into a duty to protect slash warn or protect and warn or warn and protect right. 

27:51 

And also what also confuses this a little bit is that each state again, this is a Supreme Court of California case, not AUS Supreme Court case.So it's just making precedent for the state of California.Lots of other supreme courts, state supreme courts will look to their peers and if there's a good rule or a precedent, then they can kind of adopt it as persuasive. 

28:17 

Maybe they don't have to follow that precedent, but they can say, you know, look, California is doing it this way.We are reasonable.They're reasonable.Maybe we should do something similar to them, right?Because you don't want to have to wait until something similar happens in your state in order to say like this is a good rule, or is that the case? 

28:33 

Or they.I I The way that I would describe it is that Supreme Court cases or Supreme courts, and usually their clerks are a little bit lazy and if somebody has already done the legwork, they're not going to reinvent the wheel, right?OK, OK.So if they're able to do to kind of buy in corporation coast off of the, you know, drag off the the coattails of California who had had to go through this for the first time, then they're going to do that, OK. 

28:59 

So each state deals with this a little bit differently and depending on the way that the the cases came about in those other states, sometimes it's more emphasis on the 74 decision on tariffs off 1.So it's more like a duty to warn.Sometimes it's more like a duty to protect. 

29:17 

Some states have said, you know what, both of those things don't really make sense in this context.We're going to do something else.And so they don't follow tariffs off at all.Sometimes they've made the Tarasov duty to protect things a lot bigger, a lot more onerous, a bigger duty. 

29:34 

Sometimes some states have made it even more narrow, right?So it really depends on what state individual practitioners are are are practicing.But that is kind of what fell out of the Tarasov cases.OK, so not all states then have this duty to protect? 

29:50 

Well, let's call it the duty to warn and or protect slash and or, OK.Asterisk, OK.But this is, it's interesting from I think from an ethics perspective, particularly from a bioethics perspective, like we think confidentiality is a good thing, right? 

30:08 

We we we want to protect that and we want doctors to know when to violate that and when not to violate that, right?All right.And it seems like there should be some rules about that that are clear.At the same time, cases are really particular. 

30:25 

And so you want to like leave some leeway that will protect physicians who are just trying to do their best.I I when I hear about this case, I'm really conflicted actually, OK, just to say, I mean what happened was so terrible.So I I don't in any way want to say like, no, he was fine. 

30:41 

Everything happened as it should have.Like clearly that's not the case.Would warning have made any difference?I actually don't know if it would have or not, but I I do want to protect this.You know, I don't want people to be scared to tell their doctors things, right? 

30:56 

I think there needs to be a really strict confidentiality.I do think that doctors have some obligation to protect like identifiable third parties who might be harmed.But like I'm not sure where that line is.Like how specific do you need to be?Can we use professional judgement? 

31:11 

Should it be some sort of mandatory reporting?And if So, what are the exact rules about that?I I don't, I almost want to.I want to leave some discretion up to psychologists, psychiatrists, you know, people in therapeutic relationships without leaving it totally up to them.So I just, I think the lines are really blurry for me. 

31:28 

Do you have AI mean?How do you feel?Well, you know, the courts have kind of wrestled with this a little bit.And I mean the the definition or the explanation is that physicians must use their best judgement.Healthcare providers must. 

31:45 

Do what a reasonable physician should do in that situation and that your students always it's it's pretty entertaining teaching medical students kind of these legal cases because it's funny because they think that I am going to be here and like defend all of the cases, right. 

32:05 

Or defend the court.Or, you know, but I.Or not.But often it gets into this situation where it's the the the students are like, well, it's then it just becomes, he said, she said.Right.It just becomes a a, a disagreement of like how do you ever prove whether somebody said something or didn't say something and they think it's like this gotcha question like, Oh well, you know, I could just, I don't have to document anything. 

32:27 

I just have to remember that.You know, just say that I that I had this conversation and who's going to prove me otherwise, right?Oh yeah, except that you do have to document it or else it doesn't count.That's what we always say in clinical ethics.Like if you had the conversation but you didn't write it down in the chart, then you basically didn't have the conversation. 

32:44 

It's hard to prove the conversation didn't exist, ever existed.But what's what's?I think an interesting way to to take A, to take a different perspective, is that actually we vote on it.We vote on whether we think that you did the thing that you were accused of or not.And they're like, well, we don't vote on it. 

32:59 

I'm like what?Actually we do.Listen, so we have a disagreement between two people.So we'll say you and I have a contract, I violate the contract, You bring a lawsuit against me and I say, no, I didn't.We didn't.And there was an oral contract, a verbal contract. 

33:15 

And you know, we're in in dispute.We as a society vote on whether or not we believe Devin or we believe Tyler.And the way that we do that is we have this really complicated lottery system that everybody has to be a part participant in and your name might randomly get drawn and then you and 11 of you other randomly chosen people through this lottery are presented the evidence both sides get to to say their say and you guys get to vote on what the facts are, right. 

33:46 

I mean, that's our jury process system and so.It's.I don't know.I think it's interesting.I I love teaching this case, so I actually make my 4th year students do a mock malpractice trial and the facts of the case are are kind of patterned off of this. 

34:01 

So if there's any up and coming 4th year students stop listening because it's going to ruin the mock trial this year.Yeah, I mean, so do you think that the the judgement was correct?I mean either intercept one or two.It depends. 

34:18 

That's our technique.It depends, you know.Who I'd really like to get their opinion on about.This is Doctor Michael J Redinger, MDM, University of Notre Dame Class of 20 or 2004.No, 2007 and And why would we care what Doctor Redinger thinks? 

34:38 

Well, I don't really care what Doctor Redinger said said he couldn't be with us today, but.He he's one of our colleagues and he promised me a free round of golf every time I mentioned him on the podcast.Oh geez, you guys and your golf.So, Doctor Michael J Reddinger, MDMA, University of Notre Dame, Class of 2007. 

34:59 

Do you get extra for all the name dropping all of his universities?Well, it's it's just part of the the deal, part of the deal.Yeah.So that's Tarasoff.I think it's an interesting case that, oh, your question was about the whether I thought it was right. 

35:16 

I think that it does a good job insofar as it does a good job at anything of articulating that there is this limit to confidentiality.And we we can kind of go through the process of figuring out where that line is.But that there is an exception and it's a it's an obligation in some situations. 

35:35 

I think I think it's right.I think that that tracks.How about you?I think so.I it has.There has to be limits and I think sometimes there has to be a positive obligation to reveal confidential information between a a physician and their patient.Yeah. 

35:52 

And so in clinical ethics which you and I spend a lot of our time doing, obviously we get presented with cases where the question about confidentiality that line.Is in question, right?And so there's questions about, OK, maybe my patient doesn't have, for example, my my elderly patient doesn't. 

36:12 

Her family doesn't want her to know a particular diagnosis.For example, maybe she's got cancer and they think that if we tell her she has cancer, then she's going to lose hope and the the few remaining months of her life are going to be miserable and we can protect her from that, right? 

36:29 

So maybe some really laudable goals of not telling her.You know we we have an obligation to be to maintain confidentiality but is this a situation where we would maintain it or break it or maybe break it in certain situations but on others.So yeah sometimes called the therapeutic exception like if we think revealing some information to a patient would be so detrimental to their health that we it would actually be worse for them to know than not know. 

36:56 

Maybe.Although I think generally I teach that is like that is a huge exception, like that is the minor.It has to be like a really dire situation in order for that.Like somebody would have to tell a very convincing story about, you know, somebody said, oh, if I ever learned that I had cancer, I, you know, I would kill myself like it have to be really strong like that for me to say that that we would not disclose that information. 

37:20 

Yeah, yeah, I agree with that.So, all right, tear us off.Tear us off.One and two.Yeah.Well, thanks, Tyler.Another kind of depressing case that you helped bring to life.Well, hopefully the I I think the context and the the details, particularly about Doctor Moore, who ended up losing his job by the way. 

37:41 

Yeah.Because of this, I think it helps kind of flesh out kind of what the court was thinking, which that's right.Helps.Yeah.And that's more complicated than it gets taught.So that's.It's helpful to know.Yeah.All right.Thanks, Tyler.Thanks for listening to this episode of Bioethics for the People. 

37:58 

We can't do this podcast by ourselves.We've tried and it's not pretty.Our team includes our research interns, Michaela Kim, Madison Foley and Macy Hutto.Special thanks to Helen Webster for social media and production support.Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two, and husband to one Podcast Art was created by Darian Golden Stall. 

38:19 

You can find more of her work at Darian Golden stall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.We love to connect with our listeners.All of our episodes can be found wherever you listen to podcasts. 

38:35 

Please like, subscribe and share and connect on social media. 

DON’T FORGET TO CHECK OUT OUR NEW MERCHANDISE SITE WHERE YOU CAN GET ALL THE BIOETHICS FOR THE PEOPLE GIFTS FOR THE HOLIDAYS!

Devan presents the fascinating and controversial case of 'Baby M' that captivated the world in the late 1980s. This landmark gestational surrogacy case raises complex questions about reproductive technology, parental rights, and who is a parent.

Transcript

0:03 

Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics.And he's Tyler Gibb, who, according to his students, is best described as the goat of bioethics. 

0:28 

All right, Tyler.So this season is all about historic cases and bioethics.So I have a really good one for you this week.Great.I'm excited.Awesome.So before we get started, I just want to know what do you know about surrogacy, Surrogacy. 

0:47 

Well, surrogacy gets used two different ways, right, in, in kind of our world.One is about making decisions for somebody else, right, So decisional surrogacy and then the other one is about having babies, so gestational surrogacy.So I guess which one are we talking about today? 

1:02 

So today we'll be talking about the baby kind and you just use the phrase gestational surrogacy.So what is gestational surrogacy?I understand gestational surrogacy to be when somebody else is just stating a baby on your behalf, so somebody is impregnated and renting out the uterus, for lack of a better term. 

1:29 

Renting out, it's so bad borrowing.Are we borrowing?Yeah.So the idea that there's some sort of infertility situation or somebody wants to have a baby, a biologically related baby, genetically related baby in a way other than kind of the the natural way, So there's some sort of technology involved. 

1:53 

Other people, other parties are involved.That's what I know.OK.Yeah.So that's really close.I think I want to make one sort of clarifying distinction.So there are two kinds of.Baby surrogacy For lack of a better term, the 1st is traditional surrogacy. 

2:12 

And in traditional surrogacy we have a woman who's carrying a child that is genetically related to her.So she's not that child's intended mother, but she agrees to become pregnant and carry a child with the intention of allowing another person to parent that child.So most commonly that means like the the intended mother's husband is the biological father of the child. 

2:34 

That's not always the case.You could be I I, I suppose, inseminated with somebody else's sperm and then have two different intended parents.But the idea there is that the woman who is carrying the child is genetically connected to that child.OK, so it's her.Egg. 

2:49 

It's her egg, exactly.So think before IVF.This was the way you would do it.So there is some sort of artificial insemination, but it's not the IVF process where you're extracting egg and sperm, creating the embryo and then implanting That is traditionally what we call gestational surrogacy. 

3:09 

So gestational surrogacy is when egg and sperm are created as an embryo outside of the womb and then implanted in a woman.And in gestational surrogacy, the gestational surrogate is not genetically related then to that child.So the difference being traditional, being the woman who's carrying the child is genetically related. 

3:29 

Sometimes we say biologically related.I don't think that's quite right because you do become kind of biologically related just in the mirror caring of a child.That's a bigger conversation, but either genetically related or not.And you can imagine this creates like different kinds of scenarios when a woman a a a gestational surrogate might feel less kind of. 

3:52 

Genetically, biologically, physically related to that child because it's not her genetic material, whereas in traditional surrogacy, you are then kind of genetically related.And so the bond might feel a little bit different.I mean, that's kind of a psychological question, but there, there's that distinction. 

4:08 

So the case we're going to be talking about today occurred in the time before we were having IVF gestational surrogates.So it is a case of traditional.Yeah.Gotcha.OK.All right.So yeah, so I mean, kind of depending on how you count surrogacy, traditional would be the old potentially ancient, right, if like Biblically there's cases of of women who are not the intended mothers carrying children, if you count that as surrogacy. 

4:37 

I don't know that we actually should.I think there's more complicated stuff going on with like Hagar and Abraham, but.Very old practice.This is like my Bible stuff coming out right?So another thing I want to say up front.So this is a incredibly salacious case. 

4:54 

So I want to like forefront this case by saying this is not typical.In bioethics, we often focus on atypical cases because like they're the 1st and they create a lot of precedent.They're they're interesting because they were salacious, because they made headline news, because they became big court cases. 

5:17 

But I want to say upfront that most surrogacy cases are actually really happy cases.So there's these myths around surrogacy that I want to dispel before we begin.So the first myth is that intended parents don't feel as close to their children when they're born by surrogate. 

5:37 

And there's been studies on this that show that that's not true.In fact, some studies show that when you use a surrogate, you feel more connected to the child because that child is the the phrase is exceptionally wanted, so exceptionally. 

5:52 

Wanted, right?I think the idea is that if you're using a surrogate, it means you.You probably couldn't have a child in the natural way.So for maybe for infertility or maybe because you're a same sex couple for whatever reason, the, you know, the natural way is obviously the easier way in some cases. 

6:11 

So you know there's not an accidental surrogacy.This is a plan.Do you really want kids?This is the way you're going about it.So parents say that they do not feel less bonded to their children.The the activation energy necessary to create this child is way more significant. 

6:32 

Probably more expensive too.I mean obviously way more expensive, right?Right.And I do want to get into like, do we pay surrogates or not pay surrogates as a as an ethics question in a second.So parents definitely want these children.They're they're loved, they're bonded.The other is that. 

6:50 

That surrogates themselves become overly bonded.They don't want to give away.So this quote UN quote, give away the child that this is really emotionally difficult for surrogates.Studies show that that's not the case.Most surrogates are they don't feel as though the child is theirs, that they are, you know, caring the child altruistically for another couple, and they're happy to give the child to that couple, the intended parents. 

7:14 

So that is for the vast majority of surrogates that's the case.If there is kind of conflict, it often happens when the intended parents want to tell the surrogate like how she should conduct herself during pregnancy.So, which you can imagine. 

7:30 

And actually we had some of those recently, but go ahead.Interesting.Yeah, so it Have you ever seen the movie Baby Mama?Yes, the one with Tina Fey and Amy Poehler.Yeah, Yeah.So I think this is what's bringing that to mind is that movie. 

7:47 

It's a good movie.I.Think the most accurate representation of surrogacy I can think of.Yeah, right, Okay.And then the third myth is that children born by surrogacy.Psychologically suffer from not being sort of born in the natural way again, just doesn't tend to be true. 

8:03 

So there is some kind of identity conflict that happens to a lot of children, both like adopted children and children born by surrogate around the age of seven.When they kind of develop this sense of identity that shifts around the teenage years, around 14. 

8:19 

And so after that, it seems like the vast majority of these children.Are bonded to their parents.They're psychologically just the same as any other child.So we don't worry too much about this.Have you ever?We were actually.I was on a call yesterday talking with people about surrogacy cases they've seen in the hospital lately. 

8:37 

Do you ever get called an ethics call for cases of surrogacy?No, I haven't in a long time there.I think part of that is because the the hospitals that I consult for right now don't don't do a whole lot of IVF.And so I think that that if we were in a A center, an IVF center was associated with the hospitals that I consulted at much more likely. 

9:01 

Yeah.So pretty I I'm kind of out of my depth here.That's so interesting you say that it because the call it was on yesterday, it was Catholic ethicists talking about how often they're getting surrogacy consults at their Catholic hospitals, which of course don't do IVF.And so, and and their hypothesis about why they were getting so many of these was just that. 

9:22 

When it gets out there that you treat surrogate parents really well, then the word gets out and more people want to come to that facility.So it's an interesting hypothesis, but it's not an empirical thing.But just to say, you don't have to have an IVF clinic to get known as a place where this can occur and. 

9:40 

I'll, I'll get into later, like what has to happen in Texas for surrogacy to be, like, officially recognized.But a lot of that actually has to do with this case, like this case that I'm about to talk about sets the precedent for, like, how states are going to regulate surrogacy.So perfect. 

9:55 

Yeah.Get excited.Yeah.So this, this is our goal for the whole season is to to look at the the cases that establish the rules or establish the precedent.So, all right, let's see some surrogacy.OK.So this is this is the case description. 

10:13 

Let's say like if we were to get this case as ethicists New Jersey, February 6th, 1985, William and Betsy Stern enter into a contractual agreement with Mary Beth Whitehead.The Sterns agree to pay Mary Beth $10,000, which today is like $28,000, so not an insignificant sum to be their surrogate. 

10:36 

Mary Beth agreed to be inseminated with William's sperm to carry the pregnancy to term and to yield parental rights to the Stearns.So nine months later, Mary Beth gives birth to a baby girl and this baby girl is hereafter called baby M So if you've ever heard, this is the case of baby M and she relates that it's pretty sorry. 

10:57 

So this is a traditional surrogacy.The husband of the Stearns donated the sperm.It was inseminated into Mary Beth Whitehead, and she was the provider of the egg, right?So that got the gamete straight.Yep, Yep, so exactly right. 

11:14 

So when I start talking about contracts, I start reverting to law school and start diagramming interests and rights.So okay, I'm with you.There will be a lot of legalese.That I'm going to need your help with so so, however, so she relinquishes Baby M to the Stearns. 

11:33 

However, Mary Beth changes her mind mere days after giving birth, choosing to forgo the $10,000 and to keep the child.So the Stearns subsequently sued.This is this is you know, in short the case.OK, so we have two parties who willing willingly entered into a contract. 

11:53 

Terms were negotiated and agreed upon, but then unilaterally one of the parties rejected the the offered terms of the contract and tried to void the contract.Exactly.Easy.Easy, Easy in theory, very messy In practice, maybe this is going to get messier. 

12:13 

It's going to get very, very messy before we're done.I will say though, that I mean.The way you just laid it out as a lawyer is really interesting.I'm always fighting with my students.For some reason.My students are like, well, a contract is a contract.You must fulfill it.They are very contractually minded as if like you could contract anything and you would be bound by the law to uphold that because you signed a contract. 

12:36 

I think they all grew up watching Little Mermaid.And if you sign something, actually they're not that old that that would be like our generation.But it's so funny to think that you know, I try to say, well, aren't there things you shouldn't be able to contract?Like even if you signed away you know, your body maybe that wouldn't be upheld in court and and they just it it's like it blows their minds. 

12:57 

So just to say upfront, just because you have a contract and both parties sign it?Even if there's a lawyer involved, and in this case there was a lawyer involved, that doesn't mean that the court is going to uphold this contract.So there are things you cannot contract away.Yeah, well, actually, so just to be a little bit pedantic here, you can contract whatever you want, right? 

13:17 

But when it when it breaks down and it has to go into dispute resolution process, then the question is will the court enforce the contract's terms, right?Perfect.Yes, that's right.That's what That's what I meant.Yeah.So you can write down anything you want and both parties can sign it. 

13:34 

And that's, you know, a contract.But that doesn't mean the court will have pulled it.And so that, you know, maybe that'll happen, maybe not.OK, so I want to give you a little bit more background on this case.So William and Betsy Stern, they get married 1974 after meeting as graduate students at the University of Michigan, Michigan. 

13:52 

Go blue.And quote UN quote, I'm going to, I'm going to have a lot of quotes in this.These are from newspaper reports at the time.So this is not like me saying these things.I'm going to, like let you know because some of them I would never say quote due to financial considerations, the Stearns agreed to wait to start a family until after Betsy received her medical degree and completed her residency. 

14:16 

So Betsy becomes a pediatrician.You know they want to.This makes total sense to anyone who's gone through Med school.She thinks maybe I should wait until after residency to start having children because it's a really tough time.We both know women who have had multiple children during Med school and residency.It's possible this is the 70s. 

14:33 

My guess is like there are not a ton of women in Med school.She wants to wait, you know, to start her career before she wants to have children.So.But after she completes her residency, Betsy's diagnosed with multiple sclerosis.She fears that her diagnosis is going to make it hard for her to become pregnant or that pregnancy would be a serious health risk. 

14:54 

Asterisks, that's not true.We know now they wouldn't have known this in the 70s, but women with multiple sclerosis do really well during pregnancy.I only know that because.I have multiple sclerosis and I know this from all my doctors and my own pregnancy.But.And you also have babies. 

15:10 

And I have babies, and I did really well during pregnancy.You actually don't you go into remission typically in pregnancy for whatever reason.But.But she's worried.She's worried that pregnancy might precipitate Ms. symptoms, things like blindness, paraplegia, other forms of debilitation.So what you typically get when you have Ms. relapse, she's worried that pregnancy will make it really hard on her body. 

15:33 

So they they really want to have children though, and William is, and this is really interesting, the only child of Jewish parents that survived the Holocaust.So for him having a genetically related child is really important.So that that makes sense to me. 

15:52 

So they decide on surrogacy.They, as you would have in the 70s, put out an advertisement in the newspaper.For a surrogate, this always makes me chuckle, and it my students are always just Their minds are blown like you did what in the newspaper. 

16:10 

This was not uncovered.This, this is what you would have done.You put an ad in the newspaper for a surrogate.So Mary Beth Stern responds to the advertisement and she enters into a surrogacy contract with the Sterns.So Mary Beth is, in so many ways, maligned. 

16:31 

In papers and in news reporting on this, so just to say as a forewarning, she is often described as a quote woman of no great means.She's a high school dropout that has six.She is the 6th of eight children, so she comes from a poor family. 

16:50 

She gets married in 1973 at the age of 16, so she drops out of school.She gets married to Richard Whitehead, who is 8 years older than her.And they become pregnant with their first child, Ryan.The two years later, at 18, she has a second child named Tuesday. 

17:09 

And after that, they decide they don't want any more children.And Richard has a vasectomy.They have a lot of Mary Beth and Richard have a lot of financial struggles.Richard struggles with alcoholism.They're separated for a long time.Mary Beth goes on. 

17:24 

And I can't believe this is the phrase, but it really is a spell on welfare.So she receives welfare for a while to to care for her children and herself.But by the time she is entering into the surrogacy contract, she's 28 and she and Richard have been married for 12 years and it seems like things are good with their relationship. 

17:46 

OK, so this is kind of the background of these couples.And over the next six months, William and Mary Beth commute to New York City for multiple insemination.So she's she.This doesn't often work the first time she undergoes the insemination.Many times she finally gets pregnant after 11 inseminations. 

18:07 

And yeah, so this, this is a long process.Yeah, I mean as.As far as I know, and I don't know what the percentages would have been like in the 70s, I think there's like a 10% chance of it working like intrauterine insemination. 

18:23 

So it's not, it's not, it doesn't have the success rates of IVF.It's a lot more difficult of a process to work.So on March 27th, 1986, Mary Beth gives birth to a baby girl and the baby birth certificate indicates that her name is Sarah Elizabeth Whitehead. 

18:42 

The name that Mary Beth chose for her.So this would have been the kind of.So there's not, I don't know that there is like a common practice at the time, 'cause I think surrogacy isn't, is still fairly new in the 70s as far like the way that they're doing it with intrauterine insemination. 

18:59 

So yeah, who's the?She's the mother on the birth certificate and she gets to name the child The Stearns.Take the baby from the hospital, Rename her Melissa.So Baby M, We now know her name and on March 30th, so three days later, which is the time you would typically leave the hospital after birth, Mary Beth relinquishes the baby and the Stearns take her home. 

19:25 

So at that point, the Stearns think the contract is fulfilled where she cashed her check.We've got the baby.Everyone's healthy.Everyone's good.We're good.OK.And if it had ended there, this would have been like an ideal kind of surrogacy relationship.But alas. 

19:41 

Mere days, mere days after the baby's born, Mary Beth Whitehead appears at the Stern's door in anguish, begging to have the child, if only for a short time, and she would return her afterwards.So she's she's regretting her decision.She's really missing her baby. 

19:57 

Mary Beth is deeply disturbed and struck with unbearable sadness.These are her words.She can't eat or sleep or concentrate on anything else but her need for her baby.So the Sterns acquiesce.They turn the child over to Mary Beth because you know, according to them, she claims she will, you know, die by suicide if they don't help her. 

20:21 

They don't let her spend time with the baby.So this is, you know, this.The worst case scenario for the this is.Like on their front doorstep?Yeah, he's like begging for the child back.Yeah.I don't think that I would give my child or anybody's child to somebody in that state.But yeah, yeah. 

20:40 

So for the next four months, the Stearns try to get their baby back and Mary Beth will not give them the baby back.So on April 12th, Mary Beth tells the Stearns she's not going to give the child back. 

20:57 

And the Stearns then sue to have their surrogacy contract enforced and eventually receive a court order for Mary Beth to return the baby to them.So they actually have to go to court to try to get the baby back.So the police appear at the Whitehead's home. 

21:12 

Mary Beth passes a the child through the window to her husband Richard and they flee to Florida.So this is all over the news.Of course, the Whiteheads hide in Florida for 87 days before the authorities find them at her mother's house, which, I don't know, would have seems like it would have been a place to look pretty quickly. 

21:39 

Yeah, I feel.Like we could have got to that that location quicker than 87 days.But yeah, also side note, Florida, Why?Why is it always Florida?It's always Florida, right?Poor Florida.They get a bad Rep So the court then orders Mary Beth to return the child to the Stearns pending litigation. 

22:04 

So they issue this ex parte awarding custody to the Stearns until it can get worked out through the courts.Is this sort of sound legally appropriate to you?Yeah, yeah.Yeah.So ex parte means that both parties weren't present in court.And so, I mean, if one of them is on the lamb with the child in dispute, that makes sense. 

22:22 

So, yeah, so and until that time, Mary Beth can have some limited visitation of the baby as part of that agreement, not agreement, but issued by the court.So the Stearns then seek permanent custody of the child and termination of all of Mary Beth's parental rights, which of course would have been what they agreed to in the contract initially. 

22:44 

They also seek permission for Betsy, so William's wife, to adopt the child.And devastated and desperate, Mary Beth turns to the media right so she no longer has custody of her child. 

23:00 

She feels this was incredibly unjust.She starts doing multiple media interviews.In the meantime, we have a trial.It proceeds for 32 days over two months and the majority of that is the question of what is in the baby's best interest. 

23:22 

So it's not about the contract, it's not about who has the rights over this child.The court is really considering what is best for Baby M and that seems appropriate, right?Right.Yeah, Yeah.I think that that's appropriate particularly because the contract it I think the contract might be a red herring here Devin I think because once the contract was fulfilled and and both parties. 

23:51 

Kind of went their separate ways for that couple of days period after the baby was given over to the Stearns.The contract is kind of fulfilled now this other this woman who they have this prior contractual relationship with shows up on their doorstep and they give their baby to them and that creates this dispute about custody and stuff like that. 

24:10 

So, so maybe the contract isn't as important to us.We we initially thought maybe not.Yeah.And and you know remember that this that Mary Beth is genetically, biologically related to Baby M So I think it just let's talk later about whether that makes it more complicated or not, but. 

24:28 

And she's on the birth certificate.That's not insignificant, right.OK, so during the trial, this trial is like just perfect for the media because it is full of drama and emotion and suspense.And at one point during the trial, they play a 45 minute tape, a phone call between Mary Beth and William Stern. 

24:49 

And this is splashed all over the news.And if Mary Beth had got garnered a lot of sympathy from people by going on her media blitz, this really hurt her case.So I want to play just a little bit of that tape for you now. 

25:05 

Inside the courtroom, testimony included a dramatic tape recording of Mary Beth Whitehead calling Bill Stern from Florida.I gave.Her wife.I could take her wife away if that's what you want.No, Meredith, No, Meredith.Wait, wait, wait, what I'm going to do, Bill, please.Mary Beth.Lawyers for the Sterns introduced the tape, saying they show Missus Whitehead is too unstable to win custody. 

25:26 

Her lawyers said they only show how much she cares.So oof.So what are your reactions to that?I feel like I've heard that phrase before, but never about a child. 

25:44 

Usually about me.As a teenager, that's first of all 1986.Good on them for recording everything, right?There probably wasn't a small technological endeavor to for them to. 

26:01 

Get that on tape.But yeah, that's not APR guy, but seems not helpful, not helpful.So, so the the lawyers for the Stearns, you know, say that this shows that Mary Beth is like not stable enough to be a good mother. 

26:21 

Right.So if the case is really about the baby's best interest, this doesn't seem to be working in her favor.Her lawyers say this just shows how desperate and and loving she is toward her own child.Right.So, you know, Can you imagine, Tyler, I mean, I can't really, but someone taking your children from you and how you would possibly react, Right. 

26:43 

So.Like I was just actually talking to one of my kids.We just finished a a cross country road trip and I think it was on the.We had a conversation.One of the kids was listening to a podcast about somebody who goes missing.And I we were just commenting like that is like the worst case scenario for a parent is that your child is taken from you. 

27:04 

You don't know what if they're safe, if they're alive.Like, man, it's yeah, that would be the worst.But I think the only thing worse than absolute uncertainty was would be like.This person took my child and I can't get them back right.I I I don't think that I would handle that well. 

27:21 

That would be a problem.I mean, I I don't think that I would say those things that Mary Beth said, but I don't really know.I mean I, you know, there's something about love for your child that makes you not right.You know, in the head you can, I can imagine the desperation that would ensue. 

27:37 

So, you know, and at one point so, so William Stern is telling the media that, you know, Mary Beth is suicidal.And in retaliation, Mary Beth goes on the news and says that William Stern is sexually abusing Baby M So it gets really nasty. 

27:54 

She later retracts that and says it was sort of retaliation for him saying she was suicidal, which she claims she wasn't.She was just desperate to get her child back.So I've seen a lot of now reporting on this, what you just watched and some other sort of media clips and newspaper articles from the time in the 80s. 

28:13 

It is like super interesting.I I think that they they got away with saying stuff that I I think would be fairly inappropriate today or hopefully I think we wouldn't say about especially women anymore.But this is often cast in the media, both at that Mary Beth is hysterical and you know this, you know, this kind of the classic hysterical woman. 

28:38 

But also they, some are positioning it as a kind of rich and poor problem.So they often describe Mary Beth as high school dropout, married to a garbage collector, Right.So there's a certain sort of stress on their economic situation. 

28:54 

Whereas William Stern is a biochemist and his wife, Betsy is a Pediatrics professor.You can see just kind of how they're setting up the class dynamics there and they often forefront them.So she is, Mary Beth is this poor hysterical woman the the Stearns of these upstanding citizens that just want their child back. 

29:18 

So she doesn't.Mary Beth does not come off well in most of the reporting and especially because everyone plays what you just heard that that phone call over and over again.So I want to I have one more clip to show you just to kind of get Mary Beth's side of things and this, this comes a few years after the court case. 

29:35 

But I want to hear you hear the kind of shift in tone from her after the fact.The battles.That we went through.I think that we all made mistakes and I think that, you know, everybody was kind of functioning on emotions.Kind of put everything aside and we'll truly love this little girl, and so do I. 

29:54 

So we're all going to do whatever it takes to make this thing go happy.Your children suffered a great deal during this.You write about this in the book Tuesday.Your little girl especially seemed to go through so much pain.How's she doing?Well, she was really the one who.I mean, besides my own maternal feelings, I felt a very strong obligation to the other two. 

30:12 

You know, so many people across the country were looking at that.It was just one child involved.There was two others, and they were just as much apart.This entire.Yes.In fact, when I was nine months pregnant, Tuesday came to me and she was commenting on how heavy I was. 

30:29 

And I said to her, well, someday you're going to be the same way.And she went, oh, no, I'm not.I'm going to hire somebody like, you know.So at that point I had realized that I had made a terrible mistake, but Dale couldn't verbalize it because I didn't know what to do.And then when she came to the hospital and saw me and said, please don't sell my sister, I really felt a very strong obligation to everybody. 

30:52 

And then I did try to let her go.And I and I lived one night without her, and it was the most miserable night of my life.I never want to experience it again.And when I went back together, the emptiness that I was feeling for that night before had totally disappeared. 

31:07 

And you know, we were all together.But, you know, two window maneuvers and, you know, advice of attorneys, a lot of things happened that just never show up.Wow.Yeah.That's a very different perspective or portrayal of of her. 

31:25 

Yeah.Yeah, yeah.I mean, I'll take her word for it that if my child said something to me like that, that would be pretty gutting.Yeah, yeah, goodness.And and for that, I don't remember how old that child was at the time, but.You know, from the sometimes the most profound things come out of the a child's mouth, right? 

31:44 

And and kind of is able to articulate or put words to feelings that adults can't even articulate.So, yeah, yeah.So it just gives you sort of another like merry best perspective, which is a, you know, a little different.So, but we're still in the midst of the trial. 

32:01 

So ultimately the court affirmed the validity of the surrogacy contract, but ruled that the, quote, specific performance of the contract would not be granted unless the remedy was in the best interests of the child.So again, I mean the the, the contract matters, but it only matters insofar as this is what's best for the child. 

32:19 

So the court concludes that William Stern's rights under the Circusy contract were constitutionally protected, and they terminated Mary Beth's parental rights, granted custody to William Stern, and quote, entered an order allowing the adoption of the child by Betsy Stern.And Mary Beth was then granted continued visitation, but visitation that was even more limited than it was during the trial. 

32:42 

So again, this kind of seems like the what maybe some would think is the right sort of ending to the case.I don't know.What do you think?Yeah.So it's interesting that the the court specifically called out like put put parameters on the the remedy or the fix. 

33:04 

That the the litigation was going to result in saying that regardless of everybody else's interests the child's interests are take going to take priority in the way that we decide this.I think that's that that sounds right to me particularly because the child is the I don't know victim is the right word right. 

33:22 

But it's definitely the person who is going to be most permanently impacted by this in a way that they they didn't ask for this.I mean, this is something that is completely outside of their control and.The the people who are supposed to love and protect them are are engaged in this prolonged really kind of ugly battle The I guess one of their one other thought about the the the legal process of it, it it all took place in in New York or New Jersey. 

33:52 

One of the two New Jersey.New Jersey, yeah, there there's some states, some jurisdictions where contracts are enforced, you know, each.The state kind of has its own personality a little bit from a legal perspective, the way that the laws are interpreted or applied. 

34:11 

So for example, Texas is very different than California is different than New York, but New Jersey I think is generally seen to be a very pro business type of environment, so contractual contracts.Have have meaning and they're enforced unless they shouldn't be. 

34:28 

So interesting.It was in New Jersey case.Yeah, that it was in New Jersey.Well, so this is not the end of the case.Oh, OK.Yeah.And actually well and actually all of the subsequent then surrogacy rules around contracts come from this case. 

34:44 

So we kind of we have this like initial verdict which seems perhaps appropriate, perhaps not depending on sort of how you fall.She, Mary Beth appeals the case to the New Jersey Supreme Court and the New Jersey Supreme Court reverses the court trials decision on appeal unanimously 7 to 0. 

35:08 

So they overturned the lower court's appeal, concluding that the Stern Whitehead surrogacy contract was not enforceable and violated long standing New Jersey policy on child custody which presumes equal rights of both parents and favors the raising of children by their natural parents. 

35:28 

Interesting.Yeah.By their it's an Interstate like natural they everyone uses natural at the time, which is an interesting phrase.But so they say Nope, there's we cannot enforce surrogacy contracts this this was an inappropriate decision.They totally reversed the decision. 

35:45 

Interesting.OK, Yeah.So can I read you?Go ahead.Yeah, no, that I was just gonna say that's really that's interesting for New Jersey.Yeah.But also like at the time, they were really trying to figure out what to do with these contracts. 

36:01 

And I think part of the concern was like, this feels almost like.A contract for some sort of indentured servitude or some sort of like slavery type of idea which, you know, you know in in previous episodes we've talked about, you know, if slave right holders are are part of your justification for your for your public policy, maybe we should rethink it. 

36:25 

Yeah.Well, and it's so it's interesting to me that you went, Oh, well, New Jersey probably likes contracts because they're probusiness as if this kind of contract was like other kinds of contracts, whereas the New Jersey Supreme Court says actually it's more like parental custody of children, right. 

36:41 

So it's not like other kinds of contracts.In fact, it shouldn't be a thing you can contract.So really interesting sort of like how do they understand the contract?It's like where are they going to place it in terms of the law?And and they say, no, it's not like business contracts.It's more like custody of children disputes. 

36:59 

So I want to read you this a lot of quotes, but I just think it's really interesting and I want to get your take on what the court decides.So here's a here's the first quote from the from the court decision.The surrogacy contract guarantees permanent separation of a child from one of its natural parents.Our policy however, has long been that to the extent possible, children should remain with and be brought up by both of their natural parents. 

37:22 

That was the first stated purpose of the previous Adoption Act.While not so stated in the present adoption law, the purpose remains part of the public policy of this state.This is not simply some theoretical ideal that in practice has no meaning.The impact of failure to follow that policy is nowhere better shown than the results of surrogacy. 

37:40 

Contract a child, instead of starting off its life with as much peace and security as possible, finds itself immediately in a tug of war.That's interesting.It's interesting They're using the current litigation as justification for their answer, right? 

37:57 

That's interesting to me.Yeah.OK, so that goes on.Worst of all, however, is that the contracts.The contracts total disregard for the best interests of the child.There is not the slightest suggestion that any inquiry will be made at any time to determine the fitness of the Stearns as custodial parents of Missus Stern as an adoptive parent, or their superiority to Missus Whitehead, or the effect on the child of not living with her natural mother. 

38:24 

OK, so they're taking this.Put a put a lot of weight on natural mother.Yeah very interesting and and what natural means.Again I just it's just a such an interesting phrase as if like children want to be with the.I mean what does this say about adoption It's really interesting. 

38:42 

OK, so the sale of a child, or at the very least the sale of a mother's right to her child, the only mitigating factor being that one of the purchasers is the father.Almost every evil that prompted the prohibition of payment of money in connection with adoptions exists here. 

39:02 

Wow these whoever wrote this opinion was fired up.Very fired up, yeah.I mean, they're talking about the sale of a child because remember, she was paid $10,000 to do this, to be the surrogate.So the court thinks that this does feel an awful lot like the sale of a child. 

39:21 

Or the sale, they say.Or at least, at the very least, the sale of a mother's right to her child.Right, so they go on 1st.And perhaps most important, all parties concede that it is unlikely that surrogacy will survive without money, despite the alleged selfish motivation of surrogate mothers there. 

39:39 

If there is no payment, there will be no surrogates, or very few.So they're saying, you know, that the money really muddies things up here, so it's all about the money.Second, the use of money and adoptions does not produce the problem.Conception occurs and usually the birth itself before illicit funds are offered 3rd with the law prohibiting the use of money in connection with adoptions, the built in financial pressure of the unwanted pregnancy and the consequent support obligation do not leave the mother to the highest paying I'll suited adoptive parents. 

40:10 

She is just as well off surrendering the child to an approved agency.In surrogacy, the highest bidders will presumably become the adoptive parents, regardless of suitability, as long as payment of money is permitted.Wow, they did not like the transfer of monetary, did they? 

40:29 

They did not, yeah.So they're really worried about this payment issue.And then they're saying then rich, unsuitable parents will be the ones that get to adopt children from surrogacy relationships.But rich, unfit parents can just have children too though, right? 

40:46 

I I don't know that it's solving the problem.Right.Well, and this is always I I mean, when I talk about this with my students, it's always.You know, surrogacy is this weird in between of, you know, having children, the quote UN quote natural way and adoption. 

41:01 

So when you adopt A child, there's all sorts of, you know, ways in which you have to measure up as potential parents.So somebody comes to your house, they make sure that you have the, you know, finances to take care of a child, that you don't have some sort of pass that would make you like less suitable to be a parent. 

41:20 

So there's a lot of investigation of you to make sure you're going to be a good parent.You just have children that you know, natural way, and nobody is judging whether you're a suitable parent ahead of time.So it's only you might get your children taken away if you abuse them badly. 

41:36 

But there's no, you know, setting you up to be A to determine whether you'll be a good parent.Surrogacy is somewhere in between.Perhaps, you know, should we treat it more like conception, the natural way?Should we treat it more like adoption?It sounds to me like this.The court is saying we should treat it more like adoption. 

41:54 

Yeah, it's an it's an interesting exercise and kind of we went through this as as we were talking through it out loud that one of the primary ways in which clinical ethics cases get analyzed is through comparison, right.So we always say, OK, is the here are the facts of this case, is this case more like this one or is it more like that one. 

42:13 

And if it's more like this one, then we'll maybe we'll approach it this way.If it's more like that one, we'll approach it a different way.But the first question is what is it more like and my first instinct was this seems more like a contract and the court obviously did not take take that approach to it. 

42:31 

So it's that's interesting from like how do you work through these cases type of process.Yeah.What's the best analogy?This is always what we're doing in clinical ethics.It's like, if this is a novel case, the first thing we do is find the best analogy to it we can.Yep.So they think the best analogy is adoption. 

42:46 

So the court sees surrogacy contracts that involve money as they quote, illegal, perhaps criminal and potentially degrading to women.So take it.They take a really hard stance.They will never enforce surrogacy contracts moving forward. 

43:02 

So they actually So the court decides to give William Stern custody of Baby M.They do not.They void Betsy Stern's adoption of Baby M So Betsy is not allowed to adopt Baby M and Mary Beth is allowed visitation of Baby M, much greater visitation than she had in the previous court ruling. 

43:24 

So.And and there's lots of interviews with Mary Beth who says, you know, it's sort of like we got divorced.It makes sense that the child lives with one person more permanently, but that the other person should have rights to see them.So it's more like a custodial arrangement?And she's happy with that arrangement. 

43:41 

So just a, that sets a really interesting precedent.Mary Beth goes on, she gets lots of interviews, she writes a book about the whole process.They make it made for TV movie, which is hilarious.Did you watch it?I watched a little bit of it. 

43:57 

Baby M is like 8.So.So in the case, Baby M is like just a few months old.But it's much more dramatic if she's older and she can say, no, don't take me away from my parents.Yeah, it's it's, it's really funny. made for TV movies.They just don't quite happen anymore like they used to in the 80s. 

44:16 

Yeah, gosh, that was.That was the heyday of made for TV movies.Yeah.So I want to send you so this, so actually no state at that time had laws about surrogacy.So this kicks off just an avalanche of laws because the the legal system's trying to catch up to medical progress. 

44:35 

So I'm going to send you a website that just details every state's current laws about surrogacy.I just want you to, like, take a look at it and see what you think.Surrogacy by state?OK, I've got the list up. 

44:56 

So which ones?What do What do you want to focus on?Well, just so maybe look at DC All right.Washington, DC OK, so it says. 

45:13 

As of April 2017, the District of Columbia now fully permits surrogacy agreements.Court, parent court parentage orders cannot be issued until 48 hours after birth.So that means that the like the formal transfer of parental rights can't occur until 48 hours postpartum, right? 

45:36 

Right.So why is there a waiting period?Yeah, it's a good question.So in some states I've learned like Texas, you can actually get a court order to say that upon birth you can immediately transfer rights and you can actually put the intended parents names on the birth certificate. 

45:54 

So if you arrange that ahead of time, looks like in DC that's not the case you would put.The woman who gives birth as the mother and then you can go back and change it.That's that's pretty common too.So they make you wait a lot.Who know why 48 hours.DC is apparently and it doesn't say this on this website but it's one of the only places. 

46:12 

There's just a few places you can pay for surrogacy.So after the Baby M case, almost all states, when they wrote their initial laws said no commercial surrogacy, meaning no payment you can pay for like medical care for the surrogate. 

46:30 

Those sorts of, like, things that are directly involved in the pregnancy itself, but you can't pay her a lump sum of money for being your surrogate.So yeah, yeah, that seems like that's similar to the, like, the situation with organ donation, right?You can't directly pay for an Oregon, but you can pay for all of the attendant costs of transplantation. 

46:49 

Yeah, so.So in a few states, very open about surrogacy, you can pay for surrogacy.New York is another one that just passed the law that says now you can, you can.Pay for a surrogate.And then there's all these states, sort of as you kind of Scroll down in between where it's allowable, but with a lot of restrictions. 

47:07 

So sometimes restrictions are things like age.So you have to be a certain age, like obviously we think 18, but even older, sometimes 2526.Some states require that you are already a parent, that you've already given birth before you're allowed to be a surrogate. 

47:22 

Really interesting.Interesting.It would be fascinating to know that the justification, the rationale behind that.I mean, because if you already have had a baby, then you're giving up.The second one isn't as big of a deal. 

47:38 

Which, of course, emotionally traumatic.Or it wasn't for Mary Beth, right?She already had children.Or.Or maybe it's just more something like, you know what it's like to give birth like.I don't know.It's kind of hard to imagine what it's like to give birth until you do.It would be my experience. 

47:55 

But yeah, I mean, how they justify that is I have no idea.It's very strange.Oh, that's interesting that it's almost like an like the quality of informedness and the informed consent going into it.Yeah, in in Texas.So we're one of these kind of middling states where we definitely allow surrogacy, but it all has to be contracted through the court, not even through a lawyer, through a court ahead of time. 

48:20 

So you actually have to go to court with both parties and establish that you have to write the kind of contracts in court.There are states that do not allow surrogacy at all or the the contracts will not be enforced at all. 

48:35 

So you enter into a surrogacy agreement at your own risk because the woman who gives birth to the child.Has as much rights to that child as anybody else.So even with gestational surrogacy, so even if that woman isn't genetically related, the surrogacy contract wouldn't be enforced.So really interesting differences and we'll post this website. 

48:54 

Michigan is one of these.Michigan, I think, was the first state to write a surrogacy law after the BBM case, after New Jersey, so as far as I know.No paid surrogacy. 

49:09 

All surrogacy agreements are prohibited and unenforceable.So and you could actually go to jail for paying a surrogate to be your surrogate.Goodness, I obviously I don't get these cases very.Much. 

49:24 

Maybe that's why you don't get the cases very often.Yeah, I mean, that explains it better than whatever hypothesis I pitched.Yeah, interesting.And so, so the other ones were written after Baby M, but that have been since modified to allow with certain regulations or restrictions and certain circumstances. 

49:45 

But Michigan is.So Michigan, as far as I know, has not updated anything recently.Yeah.So it's very restrictive, probably the most restrictive, Yeah.So Michigan and Louisiana are like the most restrictive. 

50:00 

Interesting.Yeah, you do.Yeah, so OK, Tyler.This is the case.Was the verdict fair?I mean, I don't.I had, I had a professor once who said that litigation is for losers because if you end up in litigation, everyone already is lost. 

50:25 

And so this is a really ugly case that unfortunately has a child at the very center of it.So I don't know that anybody wins.I think that the court although I think it's an interesting they took a really interesting stance that I think in retrospect maybe didn't pan out the way obviously I mean a lot of the laws has have since kind of ameliorated some of that but the the courts I it would be really interesting to look at the way in which the case that the Supreme Court in New Jersey was argued and like how it was framed right because they took such a a different interpretation or or approach to the the factual questions that were presented to them. 

51:15 

But again that that's that's a little bit too much inside baseball for lawyers and people who are interested in this type of stuff.But I the the focus on this case being more like adoption rather than this being more like a a business contract was is really interesting to me. 

51:34 

Yeah.And so, and another interesting point is that the court is really concerned about the exploitation of poor women, especially with paid surrogacy.Do you think that that's justified?I I do.I I think any time that money gets involved with something that should be altruistic, I guess. 

51:52 

I don't know.I mean why should it be altruistic?I guess.But I I in that way it is like the like the you know Mary Beth Whitehead's child allegedly said is you know if why would I have my own baby when I can just outsource the the pain and expense and mess and and long term ramifications to somebody who I can induce to do these things on my behalf for a little bit of money. 

52:19 

We this this comes up a lot with international commercial surrogacy, right.The idea that Rich so so wealthy individuals in the West are taking advantage of the global South and and renting out uteruses and and outsourcing the pain and expense and hassle of actually bearing children but then still having the benefit of them being biologically related to them. 

52:46 

So I think it's a real concern.I don't know that data has actually played this out or there's enough data to to make any type of analysis about whether it actually is doing that thing that we were concerned about.But I think gut reaction is this is this, this, this is.One of the big problems with this is that money is going to be used in a way that exploits people who are already disadvantaged. 

53:09 

Definitely, yeah.And my final question to you is, do you think that the case would have turned out differently if it had been years later after IVF was more established?And Mary Beth had been a gestational carrier and not a traditional surrogate, I think. 

53:27 

So I think that the court like like we said it kind of as we were going through this court was really putting a lot of hanging, a lot of their decision on this idea of natural motherhood being sacred that they have to protect and and the public policy of the state has to make sure it's not unduly interfered with. 

53:46 

So I think that that aspect of the the the gamete involved being Mary Beth Whiteheads.If that fact were switched, I think that I don't know, it's a different outcome, but definitely I think the framing of it would be a lot different. 

54:05 

Maybe it would have reverted just to merely a contractual arrangement, but I don't know.I think so, yeah.What do?You think, well, I do, I do because there's another famous Circusy case, so we won't get into it.But in 1993, it's called Calvert V Johnson. 

54:22 

And in that case, the woman was a gestational carrier and this is in California.And the and in the same sort of circumstances, she didn't want to give up the child after birth.And the court ruled that, and this is actually pretty gross, but that the surrogate was a mere host to the child. 

54:39 

More like a foster parent than a mother.Interesting.Yeah, So and again, but it again brings up the analogy of adoption, right.So, but the difference being, she's now the foster parent who's refusing to give the child back. 

54:57 

To the parents, the natural parents.So she's just this kind of the the fact that call her host is really gross, but that that is the the ruling in that case is she's the analogy as a foster parent and not, you know, not a different kind of parent.Yeah.And foster parents have significantly less rights than, you know, an adopted parent or a natural parent, whatever that means. 

55:22 

That's really interesting.Of course, that's what, maybe 8-10 years later.So IVF is more common.Different jurisdiction, but.Right, right.So again, states have wildly different laws about surrogacy.This is like the wonder of the US is whenever there's a, you know what, what does the law say about blah, blah, blah? 

55:40 

The answer is always, Well, it depends on what state you live in.That's right.Yeah.Yeah.All right.So was this a good case Tyler?Yes, excellent case, particularly because it's the watershed case for all of these other ones that deal with surrogacy and prompted, I love these cases that generate state laws because it's really uncommon for US state legislature to anticipate something like this and already have a law in the books. 

56:05 

We had a complicated case not too long ago that the like the formal recommendations from the, the professional organization was have policies in place before this circumstance happens and you're like, OK, great, that's super helpful. 

56:21 

You know, that's like the when's the best time to plant a tree?Like, 20 years ago?Right.Yeah.So then the law is always chasing kind of the clinical cases, although I might say sometimes these things are predictable.Like, really, no one could have predicted the idea that a contracted surrogate wouldn't. 

56:40 

Want to keep the child and it would create chaos.I mean, I don't know, maybe they weren't thinking that at the time and it was just so new, right?So IVF hadn't even been invented yet?It would be two years later before IVF was successfully carried out, but it seems somewhat predictable. 

56:55 

I don't know.Yeah, but it keeps happening, right?So there's all these great surrogacy cases that subsequently follow is a is a father responsible if they contract a surrogate and in the middle of the the pregnancy they get divorced and the father never really wanted to be a father and he doesn't want the child. 

57:13 

He doesn't want to have to pay child support.This is another case that happens a few years later with Bazonga V Bazonga.And so they, we just keep rolling out the cases and then the law has to then respond.Yeah.And all the permutations of what it means to be a parent and whether you're a genetic parent or a gestational parent or a Yeah, it's almost like a it's like a law school exam where you have to diagram all of the different parents and parental rights and. 

57:43 

And it's and with IVF and with the mitochondrial stuff that's happening too.It gets there can be, you know, you could contract a surrogate who carries an embryo that's not genetically related to anybody involved, right.It could be donor, donor, embryo, third party surrogate. 

58:00 

So no.And then you know, presumably the genetically related.You know Gammy providers, right?You don't want to call them parents, but, you know, you can have situations in which there's potentially lots of people who want to claim rights over a child.Yeah.Particularly if they're known donors, right.So if they're like, you know, friends and acquaintances or you know of somebody who knows of who, who it is, then it gets. 

58:23 

And sometimes anonymity will protect that, but sometimes not.I've seen a couple of really interesting cases where there's a genetically linked illness or or disease and they're trying to go back and trace like who it like which of the various parental lines that actually could be associated with. 

58:44 

And so anyway, super complicated.Yeah.And we still get, like I said, I was just hearing some emphasis talk about some cases that got recently and the questions maybe are not so complicated anymore because we do have laws about how you have to set it up.But what I hear still happens is intended parents wanting to have complete control over the pregnant woman, especially during the labor process, saying that, you know, they contracted that they get to decide, kind of. 

59:12 

What happens?So C-section?No C-section, that kind of thing.So natural not.Medicaid.Does she get an epidural?What if she asks for an epidural?In the contract, we said she's not allowed to have one.So these kinds of things come up.In which case, I think we generally say we will trust the woman who's pregnant to make her own medical decisions up until the point of birth. 

59:35 

And then apparently I just heard somebody said, well, we once had an issue with the birth mother wanting to breastfeed and the intended parents not wanting that.So it gets so complicated.Yeah.But there's also got to be limitations too.Like, I mean, if your gestational surrogate is smoking meth, I mean, I feel like I would have a an opinion about whether she could smoke meth, but but also like, is she taking her prenatal vitamin every day? 

1:00:02 

Like I you know there's a lie in there.Yes.And yeah, you can't force another person to do anything, right?So yeah, yeah, I guess you could like, try to report her to the law enforcement for doing something illegal.But beyond that, you can't force a pill down someone's mouth if they don't want to take it. 

1:00:19 

That would be abuse, right?So, like, but yeah, So what can you contract and what can't you contract?It's still.It's still a live question.Yeah, yeah.Great Case.Thanks, Tyler.ABM, talk to you soon, Devin.All right. 

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