Informed consent is the cornerstone of ethical genetic testing — but in a world of increasing genomic complexity, time-poor clinicians, and mainstreaming at scale, how do we make it work in practice?

Ali speaks with Dr Lisa Dive, bioethicist at UTS, about what informed consent really means in the context of genetic testing — and why the standard model of ticking boxes and signing forms falls well short.

This is a conversation about language, values, human connection, and the future of ethical genomic care.

Guest

Dr Lisa Dive is a bioethics academic with a philosophy background and deep expertise in the ethical dimensions of genetics and genomics. She teaches ethics and research in the UTS Genetic Counseling program and has worked extensively with clinical colleagues on real-world ethical challenges in genomic medicine. Lisa played a key role in the ethics arm of Mackenzie's Mission — Australia's landmark reproductive genetic carrier screening study.

What We Cover

What informed consent actually is — and why it's a communication process, not a form. Lisa reframes consent as a dynamic interaction aimed at helping people understand whether a genetic test aligns with their values and will genuinely benefit their life.

Why genetics is different — genetic information is complex, probabilistic, and often uncertain. Unlike a standard medical test, results rarely deliver a simple yes or no. Preparing people for that ambiguity is central to the consent process.

Individual autonomy vs family implications — genetic results don't just affect the person tested. Lisa introduces the concept of relational autonomy — the idea that good decision-making is situated within family, social, and cultural contexts, not just individual preference.

Cultural and social dimensions — decision-making norms vary. In some cultures, family elders are central. In others, individual choice is paramount. Adapting consent processes to those contexts isn't optional — it's essential.

The "least worst decision" — a phrase coined by host Ali Archibald to describe the genuinely hard choices people face in prenatal and reproductive genetics. Lisa validates the concept and unpacks how skilled clinicians help people reason through it.

The gap between how consent should work and how it actually does — time pressure, administrative burden, and tick-box forms all erode the quality of the consent conversation. Lisa identifies this as the central challenge.

The Mackenzie's Mission decision aid — a standout example of digital tools done right. The decision aid didn't change most people's decisions, but it dramatically increased their confidence. Unexpectedly, it also prompted couples to discuss their values with each other — bringing male partners into the conversation in a way clinical consults rarely had.

AI scribes and freeing up the human — removing the burden of note-taking during consults creates space for clinicians to be more present. Lisa sees this as one of several ways technology can amplify — rather than replace — the human elements of care.

Scaling informed consent ethically — as genetic testing becomes mainstream and volumes grow, digital tools will be critical. But Lisa is clear: the goal is to deploy them where they add value, not to outsource the human interaction that sits at the heart of good consent.

One thing she'd change — stop defaulting to "more information is better." Utility should be the lens. Does this test give this person information that will genuinely serve their life? That question should anchor every consent conversation.