Joy Boyer retires after championing bioethics research at the cutting-edge of genomics

Anna Rogers, M.A. October 17, 2023 PRESS CONTACT

From pastor to program director in the Division of Genomics and Society, Joy Boyer concludes her distinguished career at NHGRI.

Joy Boyer has had a meaningful and productive career at the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health, but how that career started is an interesting story.

Boyer first arrived at the NIH as a student of religion. Coming from a long line of ministers, Boyer graduated with a degree in religious studies from Oberlin College in 1983. During her studies, Boyer trained in chaplaincy at NIH, but found that the ministry was not her calling.

Boyer transitioned to becoming a program analyst at NIH in the Office of the Director. There, she first heard of NHGRI’s efforts to study the interplay between genomics research and society through the institute’s fairly young Ethical, Legal and Social Implications (ELSI) Research Program. The program’s overarching mission aligned with the same ambition that had drawn Boyer to the ministry: a desire to help others.

In 1996, Boyer reached out to Dr. Elizabeth Thompson, who at the time singlehandedly managed NHGRI’s ELSI Research Program, and Boyer was then recruited to join the institute. Through Boyer and Thompson’s collective efforts, the ELSI Research Program developed into an expansive force to study the ethical and social implications of genomics advances.

Throughout her career at NHGRI, the focus of Boyer’s role was to facilitate the funding of training opportunities and investigator-driven research projects. Collectively, these efforts generated many important findings that have helped to guide genomics research as the field has matured. Her skills were also recognized beyond NHGRI, and she was called on to advise many other institutes on how they could incorporate ELSI research into their research portfolios.

In an interview with science writer Anna Rogers, Boyer reflected on her career, the history of the NHGRI ELSI Research Program and the exciting future of research at the interface of ethics and genomics.

This interview has been edited and condensed for clarity.

Anna Rogers: How have you seen NHGRI’s ELSI Research Program change over your career?

Joy Boyer: As genomics has evolved, the ELSI Research Program has evolved in parallel . Initially, the ELSI Research Program was seen with a lot more skepticism by the genomics research community. I've always thought of the ELSI Research Program as a kind of Rorschach test. When people look at it, they see their greatest fears and their greatest desires. There's always been this tension with the ELSI Research Program, but I think it's a very productive tension.

On the one hand, there were these grand expectations that ELSI research was going to solve all the social challenges that could potentially be related to genomics. On the other hand, there were many who saw the ELSI Research Program as basically an incompetent plumber squeezing the pipeline of genomics and inhibiting good, life-saving research from moving forward. Not only was the ELSI Research Program seen as this incompetent plumber, but it was also seen as somewhat irrelevant. You’ve got a bunch of philosophers and historians thinking about things, but does that really make a difference?

As the Human Genome Project evolved from basic genomics research into clinical genomics, which clearly involves humans, ELSI research was seen as much more valuable and relevant. The ELSI Research Program has therefore become more integrated with genomic medicine and genomics more broadly, and I think that was always the goal since the early 1990s when the program started. When ELSI and genomics research work well together, we can better ensure that genomics research proceeds in a safe and effective way.

Rogers: What were some pivotal moments in your work in ELSI research?

Boyer: One of the most pivotal moments was the recognition that genomics research involved human subjects. I can remember a moment where it became apparent that it was important to know the source of the sample for the first human genome reference sequence, and that future sequences needed to be more representative of human genomic diversity and not just a single individual.

Another key moment — maybe more than anything — was the realization that genomics would be used in thinking about racial and ethnic categories, which generated a lot of important ELSI research. There was a genomic variation ELSI research consortium, and that was another kind of inflection point for ELSI research, where it was clear that the research being done was essential to genomics research in general.

A third important development was the decision to embed ELSI research into larger genomics programs so that ELSI research would happen in concert with genomics research. It is a complicated process, and requires careful attention in balancing the roles and responsibilities of the investigators, but the work of these embedded projects has been valuable. It's also allowed the genomics and ELSI research communities to become much more integrated and to develop a common language along with a sense of trust, which is important for transdisciplinary research.

Rogers: What are you excited about for the future of ELSI research?

Boyer: I'm really excited about the work that's being done in health equity and social justice, such as recognizing the impact of systemic racism and ableism on how individuals, families and communities interact with genomic information. I think this is really important, and if we can't seriously deal with issues around social and health inequities, the rest of research kind of becomes meaningless.

I'm also excited about the team I'm leaving behind. They’re a great group, and they have many good ideas. I think there are plenty of exciting things coming down the pipeline, so I have high hopes for the future of the ELSI Research Program.

Rogers: What are your plans for retirement?

Boyer: You know, everyone asks that question, and I don't have a good answer. I think I'm going to catch my breath, and I plan to do a lot of weeding in my garden. It’s funny; in some ways, I feel a bit like I did when I got out of college. I feel like I can do anything, and that's such a liberating feeling, so I really want to take some time to figure out what I'm going to do next.

Last updated: October 17, 2023