Seeking Answers to Big Questions

You might say that Eric Juengst’s affinity for bioethics and genetics demonstrates the interplay of both nature and nurture. The son of a Presbyterian minister, he majored in biology at the University of the South, Sewanee, at the time of the debate on the safety of recombinant DNA research in the 1970s. This put him in the right place at the right time to study moral questions arising from the new techniques of gene splicing and engineering bacteria that were speeding ahead of society’s ability to grapple with them.

Over 30 years later seeking answers to those questions has taken him to positions in medical ethics on the faculties of University of California-San Francisco, Penn State University and Case Western Reserve University. From 1990-94, he served as the first chief of the Ethical, Legal and Social Implications Branch of the National Human Genome Research Institute at the National Institutes of Health – the program which spent a decade mapping the human genome.

He now leads the University of North Carolina’s broad-reaching Center for Bioethics, which considers bioethical issues of all types, not just in the realm of genetics. He also leads the North Carolina Translational and Clinical (NC TraCS) Institute’s Ethics Core. NC TraCS is home to UNC’s NIH Clinical and Translational Science awards (CTSA).

How he got started

At Sewanne, Juengst completed his B.S. in Biology with an undergraduate thesis project on the scientific aspects of recombinant DNA techniques, but said he became increasingly interested in the social debate accompanying them. This was on the heels of the 1975 Asilomar Conference where scientists self-imposed a moratorium on the research, the Boston city council shut down labs at Harvard for fear a dangerous plague would escape and Michael Crichton released his book The Andromeda Strain. So in 1978 he entered a new graduate program in bioethics based in the philosophy department and the Kennedy Institute of Ethics at Georgetown University.

He said he spent the first year at Georgetown reengineering himself from his original pursuits as a bench science student and navigating a culture shift into the field of philosophy. He thought he’d continue on the bench science and society side of ethics, he said. Yet his first job at UCSF, housed in the medical school, introduced him to questions of professional and clinical ethics in medicine.

“It’s such a rich environment for people in my field to be in the medical school, because every conversation you hear on the elevator is food for thought,” he said.

As Juengst explained, questions of ethics in medical practice go back in time, but they were largely passed down through an oral tradition through the training of doctors. What the 1970s brought was an interest in formalizing ethics as a scholarly area of study within schools of medicine, under the term “bioethics." Meanwhile, new medical options for both the beginning and end of life presented questions to families beyond, “What can we do?” to “What should we do?” This also coincided with the paradigm shift in medicine to shared decision making between physicians and patients.

Juengst, who holds joint appointments in the departments of social medicine and genetics, within the UNC School of Medicine, explained:

“Social medicine studies questions about the fit between new medical options and the social and cultural context in which they are playing out.” Development of community medicine and family medicine raised questions about factors, other than the individual, which influence a person’s health, such as family context, cultural context, and the injustices highlighted by the Civil Rights Movement.

Bioethics, Juengst said, focuses on the openly moral questions that the stakeholders involved in medical decisions face, be they the families, physicians or the institutions themselves. So, for example, a family with its physician struggles with whether to take a loved one off life support, while the institution struggles with how much indigent care to provide without compromising the care of all of its patients. As the science of genetic testing and mapping of an individual’s entire genome advances, questions arise about how much patients want or need to know about their odds of developing a dreaded disease, especially if there are no preventative measures they can take. Meanwhile, institutions must safeguard genetic information on individuals for use in research projects that can move the science forward for potential treatments and cures of such diseases. Questions of informed consent for participation in such research also challenge scientists, individuals and institutions.

The role of the Center

The mission of the UNC Center for Bioethics, which is beginning its second year, is to facilitate research, education and consultation on ethical issues in biomedical research and health care. The center is sponsored by the UNC School of Medicine, but includes faculty from and partnerships with programs across the university and the UNC Health Care system.

Its work ranges from practical application to teaching to scholarly research. For example, the center now houses the hospital ethics committee office and the ethics consultation service in the hospital, led by Arlene Davis, R.N., J.D. It also houses the research ethics consultation service through NC TraCS. The center works globally through core faculty member Stuart Rennie, Ph.D. on issues of biomedical research ethics in Africa. New hire Anne Lyerly, M.D., M.A., an ob/gyn, serves as the center’s associate director. Her research focuses on socially and morally complex issues in women’s health and reproductive medicine. Rebecca Walker, Ph.D., oversees the Center’s involvement in teaching university courses, medical school instruction through the Department of Social Medicine and providing clinical teaching in the hospital. Hiring is underway for someone who can help the center build on its existing strengths to expand its scope further.

Juengst’s work so far has largely involved building bridges himself. It has been about forming the infrastructure for consultation, teaching and research in bioethics to flourish at UNC across a range of departments and to encourage collaborations. He has established formal collaborations with multiple scientific research centers on campus, as well as the Parr Center for Ethics and the Medicine, Cutlure and Literature program in the College of Arts and Sciences. In addition, the Center co-sponsored the 2011 National Undergraduate Conference in Bioethics with Duke University and inaugurated a statewide network of academic bioethics programs in North Carolina. Not bad as he begins only year two of building up the center.

In fact, when asked what he’d wish for at this point, it was not more research money, as you might expect from an academic and center leader.

“It would probably be to build some sort of instantaneous transportation system around the campus like Star Trek’s teleporter,” he said with a hearty laugh. “So I could pop over to the philosophy department or the Law School and back in five minutes.”