Clinical Trials and Death: An Interview With Bioethicist Peter Koch

Narrator: This is the DarshanTalks Podcast. Regulatory guy, irregular podcast, with host Darshan Kulkarni. You can find the show on Twitter @darshantalks or the show's website at darshantalks.com. Darshan: Hey, everyone. Welcome to another episode of DarshanTalks. We have with us esteemed ethicist, world-renowned bioethics expert, Peter Koch. No relationship to the brothers. He's just extremely rich is what I gather. [inaudible 00:00:38] Peter: Some big shoes to fill already, Darshan. Darshan: No, Peter and I met and we've been talking about bioethics actually for several months at this point and he was kind enough to agree to jump onto the podcast and talk to us. We were discussing some different topics and he was telling me about topics he explores and the one thing that really popped... And there are two different topics we were considering. The one topic I'm really, really excited to explore is this bit of information around can I do clinical trials on patients after they've passed away? What rights do patients have after they've passed away? But before we get into that, Peter, do you want to introduce yourself to us? Peter: Sure. Yeah. I'm an assistant professor of philosophy at Villanova University and my interests are really in clinical ethics, less on the research side, more on the decision-making, patient/physician/family interactions. I did my post-doc a few years ago in clinical ethics, so it's a pretty specific field in that sense. Generally I work in bioethics, some philosophy of medicine, which are questions of what counts as a disease, what counts as a disorder, et cetera. Yeah, so looking forward to being on your show. Darshan: Thank you. So, let's start with the basics. If I am a patient and I agree to participate in a clinical trial and then I pass away, first of all, does my consent carry over? Peter: Also to lay the groundwork, let's keep it all within an ethical framework because laws reflect different things in different places. Darshan: Fair enough. Peter: A good parallel is organ procurement because organ procurement of vital organs takes place after death. When we talk about whether or not we can take organs from someone or do things to someone after death, we're talking about a whole different set of what's at stake ethically from prior to death. Before somebody dies, one of the things that we're concerned about is their wellbeing, how this impacts how well their life goes. So that's how you get all these really fundamental ethical principles like do no harm. That's a claim about how we should treat patients and how we should maximize their wellbeing or at least promote their wellbeing without causing undue harm to them, which is essentially a drop off of wellbeing. So that's a really fundamental way of approaching how we treat people and people can say, "Yeah, you can risk harming me as long as I consent." The typical consent framework is "I realize you're going to do something to me and my body, and I'm going to waive my typical right against someone doing that and now they're permitted to do it." So the interesting thing about after death is it raises a ton of philosophical questions about what does it mean to wrong someone after death? And even more problematically, what would it mean to harm someone after death? There's a lot of good, classic examples about this. For example, if say, Darshan, you put together a really nice trust for future generations and you're like, "I want my grandkids to inherit X, Y, and Z or my kids." And so then you die and then your trust gets activated or executed, whatever you want to say, and we've totally misused and abused your trust. We don't use it in the way it was... And we slander your name, all these things.