Amy L. McGuire, J.D., PH.D.,
Amy L. McGuire, J.D., Ph.D., the Leon Jaworski Professor of Biomedical Ethics and Director of Baylor College of Medicine’s Center for Medical Ethics and Health Policy, sat down with Texas Medical Center chief strategy and operating officer and executive vice president William f. McKeon to talk about the ethics of genomics research and the future of health policy.
Q | Tell us a bit about your formative years?
A | My parents grew up on Long Island in New York, and I was born while my dad was in medical school in Brooklyn. He’s an ophthalmologist, and we moved to Florida after he completed his fellowship at Johns Hopkins when I was about five years old. I grew up in Jupiter, Florida. My mom was a therapist and I had an older brother and a younger sister. I lived in Florida through high school, and then I left to attend the University of Pennsylvania, where I studied psychology. I was also very interested in cultural anthropology as an undergraduate.
Q | What triggered your interest in cultural anthropology?
A | In college I became very interested in different cultural belief systems. I spent a semester in Australia studying aboriginal studies, and I was also inter- ested in Native American studies and the spiritual beliefs held by different cultures. I ended up, towards the end of college, working with a newly formed NPO called DreamChange. It was led by a man named John Perkins, who had done work in the 1960s when he was in the Peace Corps, in South America and Ecuador, and he had become close to the indigenous populations down there. He started leading trips throughout Ecuador to study the belief systems of the indigenous populations and the healing practices of the local shamans.
I joined the DreamChange organization and started leading trips myself, for approximately a year, between college and law school. After I started law school I lost touch with the organization, but I recently reconnected with John and this has come full circle because I was recently asked to join the board of directors of DreamChange. The organization is now committed to educating educators, business leaders, and individuals, using some of the shamanistic principles, to shift the way modern societies value each other and the planet and to create a more sustain- able world.
Q | How does your work with DreamChange tie into your interest in medical ethics?
A | Through my work with DreamChange I became very interested in complementary and alternative medicine, and the ethics and regulations around different healing modalities in the United States and abroad.I decided to enroll in a J.D., Ph.D. program that was focused on health law and the medical humanities. While in law school I did a little work on the ethics and regulation of complemen- tary and alternative medicine but then became interested in other areas during my Ph.D. A couple years ago, I had an opportunity to return to that early interest and taught an undergraduate course at Rice on the Ethics and Regulation of Complementary and Alternative Medicine, which was really fun for me, but other than that I haven’t really done much scholarship in that area.
Q |Do you have any mentors?
A | I think we all have mentors, in different ways. As an undergraduate at Penn, one of my mentors was Martin Seligman, who at the time was develop- ing the concept of learned helplessness and the role of optimism and pessi- mism in depression. I did my under- graduate thesis in that area. While I was working with him, he started to shift his interest towards positive psychology, which is what he focuses on now, and we had some really engaging discussions about positive psychology, happiness, and what it means to live a meaningful life. He was a great mentor, although he was very disappointed that I didn’t go on to get a Ph.D. in clinical psychology or something similar.
Early in my career, and still to this day, two of my biggest mentors are Larry McCullough and Baruch Brody. I started working with Larry when I was a Ph.D. student, and he continues to be a significant mentor to me today. He’s a philosopher, and has a very sophisticated and rigorous way of thinking that appeals to me, as a lawyer. I have learned a tremendous amount from him over the years and still frequently seek his advice on papers and grants, as well as on administrative matters in the Center. Baruch was the founding director of the Center for Medical Ethics at Baylor. He’s an extremely thoughtful and productive scholar, and is very well respected in the field of bio- ethics. He was a great leader who ran our Center for 30 years and I continue to call on him occasionally, even though he has retired from Baylor, for advice and support.
I’ve had other mentors along the way, including Richard Gibbs, who got me interested in genetics and provided many opportunities for me profession- ally. There are also many other clinical and scientific colleagues who through collaborative efforts have taught me a lot. But honestly, from a career perspective, my biggest mentor has been my husband. Sean is a clear thinker and a great writer. He taught me how to write academic papers. I use his advice all the time now with people who I mentor, because many of us who come from a humanities background have a hard time learning how to write for a medical or scientific journal. I’ve also learned a lot from him about the politics of working at a medical school, which he learned early on since his father was the chief of medical oncology at UTHSC in San Antonio.
Q | Can you share your thoughts about the major issues around genomics?
A | That’s a very interesting question. I think a lot of the ethical and policy issues in genomics are not only about how we will look at ourselves, but also about how others will view us and treat us. And that stems partly from a very real history of abuse based on ideas about genetics and inheritance. This dates back not just to World War II and the Nazis killing millions of people in an effort to ‘purify’ the human race. Some may not be aware, but we also have a history of this in the United States. In the early 1900s, for example, thousands of Americans who were deemed ‘unfit’ to reproduce were forcibly sterilized under eugenics laws in the United States. So, I think there’s a lot of concern about the social construction of what makes a particular individual or group ‘unfit,’ or ‘not pure,’ or ‘not worthy’ of either reproducing or having access to other social goods and benefits. This is a huge social issue, and to a large degree it stems from a misunderstanding of the science and how powerful (or not) genetics is in determining certain traits, such as criminality or intelligence. The concern about the misuse of information to harm individuals or groups, in turn, raises policy issues about privacy, discrimination, and access to information. I think that’s a major concern for people. And I think it’s a very legitimate concern, given the history that we have. Another issue has to do with genetic selection. There’s a lot of talk right now in the media about ‘designer babies’ and whether couples should be able to use genomic technologies to select ‘genetically superior’ embryos, or egg or sperm donors when that is needed. There’s some consensus that most would like to avoid children being born with devastating, fatal diseases in child- hood, if at all possible. However, should we allow the use of this technology to ‘weed out’ embryos with an increased genetic risk of adult onset disease, or to select for children of a particular gender? And what are the implications of going down that road? As genomic testing becomes more widely available there’s also a lot of con- cern about how people might respond to some of the information that they’re getting. I think that, partly, that comes back to interpretation.
Q | On one hand, you know that the information may provide you the opportunity to make choices. But on the other side, that information could also add a lot of pain and worry that might not be relevant at all.
A | Genome sequencing is a fantastic tool, and has been used to find causative mutations in many patients with severe undiagnosed diseases. But it provides a lot of information, and there’s concern that individuals will be overwhelmed by the amount of information presented and that the results will cause anxiety or distress. The data do not really support that. Numerous studies have shown that we are really a very adaptive species. We generally tend to adapt well to the information that we get.
Q | Tell us a little bit about your role in the Texas Medical Center strategic planning process around health policy.
A | I think the most exciting thing is that we have many areas of expertise in the TMC, and health policy in particular, is something that I think needs to be looked at from a comprehensive, holistic perspective. We talk about getting stakeholder perspectives, but it’s really important to look at policy from a variety of different lenses, and to be responsive to all of those different perspectives when developing policy, because it affects many people in different and important ways.
So, for example, some people in the medical center have real expertise in doing large, quantitative studies around important policy issues. Others, like those at the UH Law Center, can pro- vide legal analyses of different policy solutions. We have Vivian Ho over at the Baker Institute who is an economist. Our center focuses on looking at policy from an ethical perspective. There are physicians in the group who are look- ing at it more from an on-the-ground, in-the-trenches medical perspective. We haven’t yet engaged consumers or the public in this effort, which we will need to do at some point in the future when things get more formalized. But I think it’s really important when you’re thinking through policy issues to get
all of those perspectives in the same room and to draw on different people’s expertise. I think this is a great area for collaboration, because it’s not competitive; we all bring something different to the table. And it really is most effective when you have a highly talented group of people in the same room together talking about a particular issue.
Q | What excites you most about the future of ethics and health policy?
A | I think the collective conscious around ethics and policy is growing. Our center has been around for more than thirty years and we have always been very busy, but it feels to me that there is a growing interest in these issues and these topics from a variety of different perspectives in the medical center. For example, we run clinical ethics consultation services at several of the local hospitals to try to help health care professionals, patients and families address ethical issues and conflicts that arise in the course of medical care. So we have people on call 24/7 who carry a pager and if there is an ethical issue or conflict that happens at the hospital, which happens every single day at every single hospital, you can call somebody to come in, just like you can call a neurologist, and they come and help try to address the ethical issue.
We provide clinical ethics consultation services at several local hospitals, but our largest program by far is at Houston Methodist Hospital System. For years we have been running this service at Methodist and we have always done about 50 consults per year. But this has been growing, and last year we did 450 consults at Methodist. That’s not because they’re having more issues, it’s because people are more attuned to the issues. And it’s largely due to the hard work of that program’s director, Courtney Bruce, and the other center faculty and staff who work there. It is also due in part to the fact that the hospital leadership supports this pro- gram and is really dedicated to it. And it’s partly, I think, just a more global awareness of the issues.
So, even nationally, I think there’s a greater recognition that this is a really valuable service and that it adds something—a new dimension—to the practice of medicine that’s really important. And I think we see that in health policy also, at least in the medical center, with Baylor’s new health policy institute and the Texas Medical Center’s focus on a collaborative health policy initiative. I think it’s a really positive move to more consciously be thinking about these issues and how they impact everything that we do in medicine and science.