Heads up

This episode is best listened to (or read) after our other one about the intersex community.

Content warning – some of the discussion around surgeries is considered violent given their non-consensual nature

What makes a surgery medically necessary?

A “rule of thumb” definition is: will not intervening cause the loss of life or limb

 Some gonadectomies – or the removal (-ectomy) of the gonads (anatomical precursors to the ovaries or testes) – have been justified to avoid the tissue becoming cancerous.

But, a 2016 consensus paper on DSD care said there is “poor evidence” to support that

Definitions:

Hypospadias: when opening of where urine comes out is not at the very tip of the penis.

Congenital Adrenal Hyperplasia: where a missing enzyme creates more testosterone and the clitoris is often enlarged

There are others, but these are two of the main variations that folks who have experienced non-consensual surgeries have.

The past, the present:

1950s-1990s, John Money: a child’s gender identity would follow the anatomy of its genitalia, so if you change the genitalia you resolve any ambiguity

Most current surgeons who perform these reject the reasoning presented in the historical paradigm, and they know that genital appearance doesn’t dictate gender identity

Now: many variations in genitals are defined as pathologic due to cultural definitions and expectations that people will want to have heterosexual penetrative sex.

Example: a penis that can’t penetrate isn’t a penis

Example: a clitoris that is too big….is too big

One current common justification for surgery is that it can alleviate the emotional distress from someone’s variation

An ethicist’s takedown of surgeries performed on intersex minors

Surgery done for a variation that isn’t life or limb threatening and done to improve psychosocial (meaning emotional, stigma-based, psychological) suffering is NOT ethical. 

Don’t forget: there ARE surgeries performed on infants with DSD variations that are medically necessary – these ethical concerns don’t apply to those

Parental stress is not a medical emergency, and parental stress does not define medical necessity (as per 2016 consensus paper, a landmark paper in intersex policy). 

 Four ethical reasons that infant and child DSD surgeries are a no-no:

o   High potential for harm from invasive surgeries, especially on fertility and sexual pleasure

o   Surgeries of this nature are not routine procedures, like a vaccine; rather, they are closer to a procedure affecting fundamental rights like sterilization. So, there is an inconsistent absence of legal oversight

o   There is almost no outcome data that supports the justification of psychosocial alleviation for these surgeries

o   Ongoing justification for surgery: ease parental distress and promote bonding with children. Two issues: 1) not an agreed-upon conclusion, and 2) still isn’t an ethically sound reason to subject an infant or child to a highly invasive surgery

o   The big concern is: was this surgery justified by psychosocial reasons?

Surgeries: making medical care more complicated

After surgery, many folks need follow-up medical are

Having your gonads removed during surgery means you will have to hormones that would have otherwise been made in your gonads

Some folks may need follow-up procedures on the body parts that were part of the original surgery

Why does this suck?

First off, we’re talking about American health care, so needing life-long insurance (to see doctors for the consequences a surgery performed before you even knew what the term “insurance” meant) makes things hard.

Folks age out of pediatric practices, or move, or folks retire – so continuity of care is also quite challenging

Dr. Gregorio pointed out that there are only a handful of academic centers that can manage folks with surgical complications at the standard of care that they warrant.