The Ethics of Precision Medicine and Burned Agency with Paul Scherz and Travis Pickell

Paul Scherz (0:01)

Welcome to The New Books Network.

David Carlson (0:05)

My name is David Carlson. I am with the University of Notre Dame Press. Thank you for joining us today for a slightly unusual, but I think quite exciting installment of our Books for Better Understanding series. Normally, we invite an author and a guest on to discuss a book, but today we have two authors discussing two books. We're joined today by Paul Scherz, author of The Ethics of Precision Medicine. Problems of Prevention in Healthcare, and Travis Pickell, author of Burdened Agency, Christian Theology and End-of-Life Ethics, which are both available now from the University of Notre Dame Press.

Paul Scherz is the Our Lady of Guadalupe Professor of Theology here at the University of Notre Dame where he researches the intersection of theology, science, medicine, and technology. He's interested in the role of virtue ethics of the stoic variety, especially in moral theology. In his scholarly publications, touch on topics including human enhancement, genetic technology, end-of-life ethics, the moral formation in scientists, the role of risk in contemporary practical reason, the ethics of artificial intelligence, and of course, the ethics of precision medicine. So in addition to the ethics of precision medicine, he is also the author of Tomorrow's Troubles, Risk, Anxiety, and Prudence in an Age of Algorithmic Governance, which was published in 2022

Science and Christian Ethics, which was published in 2019, and he is the co-editor, along with Joseph Davis, of The Evening of Life, Responding to the Challenges of Aging and Dying Love, which was also available from the University of Notre Dame Press, and was published in 2020 Travis Pickell is assistant professor and chair of the theology and ethics department at George Fox University, where he also serves as the director of the Cornerstone Core curriculum, the co-director of their program for leadership and formation, and a faculty fellow of the George Fox University's Honors Program. He is also a research affiliate and advisory board member for their Human Flourishing Program at Harvard University's Institute for Qualitative Social Science, and is the co-chair of the Christian Theology and Bioethics Interest Group at the American Society of Bioethics and Humanities. His research interests include ethics, theology, religion and medicine, technology, pluralism, and public life. So you can see perhaps why we wanted to bring these two together a little bit. Thank you both so much for joining me today. And I'm actually going to start us off this time with a question for each of you to answer in turn. If you could just sort of talk about like how the book came to be sort of your inspiration, you know, et cetera, et cetera. And I'm going to go ahead. I'll start with Travis.

Travis Pickell (2:46)

Yeah, great. Well, first of all, thanks for having me. It's such a joy to be able to do this. And talk to Paul who I've known for some time as well. And but to talk about his book, which I very much enjoyed getting a chance to read. So, yeah, my book comes from wrestling with some experiences that I had early on in my own doctoral studies at the University of Virginia. I went there to do ethics and theology and did not have a sort of bioethics interest in mind.

But the very first week that I was there, a couple of things happened. I was assigned to be a teaching assistant for a large 350-person bioethics class with Jim Childress, which was very interesting even on its own terms to be able to start to ask questions that, or to realize that bioethics is about very deep questions and it's always changing and it's always interesting. And so that kind of opened up my mind on one end. But then I also was diagnosed with testicular cancer, my very first week of my Ph.D. program. So I was in and out of the hospital doing chemotherapy and surgery while also teaching this bioethics class. And so having that experience of both the practical personal experience in the hospital but also the more academic side at the university, just cracked open the hospital and healthcare as a moral space and one where deep philosophical and theological questions are constantly being raised. And even for myself and started asking questions about the assumptions that I was bringing into those experiences and whether they aligned with some of my deeply held core convictions that came out of my own Christian faith. And realized that many of them, the unreflective ones were not and that maybe I had to rethink some things. And so it got me thinking about the assumptions that we all bring into those encounters and where they come from and how they're influenced by the society around us. And also how they may be reformed and reshaped through a more intentional engagement with Christian theology and Christian practice. And really that kind of came to the fore thinking about how we struggle to die well in our culture. A lot of the things that drive some of the problems that we all can recognize, but also don't really know what to do with. Sometimes these things feel like wicked problems, that everything you try to change actually makes them worse. And so trying to think about that sort of at the meta level and the macro level, but also on the personal individual level, got me thinking about primarily about choices, decisions and the assumptions that we have that go into those decisions about what it means to have or preserve dignity, what it means to exercise autonomy, how our assumptions about our agency being active and in control are ultimately shown to be somehow problematic when it comes to the end of life, because the end of life serves as a symbol of your ultimate lack of control in many ways. And so that became a big puzzle for me. And so that was kind of at the root of the book and the central sort of concept, Burdened Agency, to me, came about by seeing that two things were happening at the same time. We have more and more choices about how and when we die, that actually are in many ways thrust upon us or upon us on behalf of others. So doctors or proxy decision makers as well, deciding for people in their care. More and more decisions are being placed in our hands, whether we want them or not. At the same time, we have less and less to go on culturally. We don't have very thick or strong cultures around death and dying practices of how to make meaning out of them, and what to do in our post-secular pluralistic society where things are. We might have religious traditions we engage, but they're not necessarily very instructive for us at this time. So that's the basic problem that I'm trying to wrestle with and give somewhat of a constructive response. So that's how the book came about.