The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continued its discussion about democratic deliberation in bioethics and turned its attention to how bioethics issues are treated in the national dialogue, and the role of national bodies like the Bioethics Commission in fostering democratic deliberation on bioethics. The Bioethics Commission heard from F. Daniel Davis, Ph.D., the director of bioethics at the Geisinger Health System and former executive director of the President’s Council on Bioethics under President George W. Bush, and Jason Schwartz, Ph.D., M. Bioethics, the Harold T. Shapiro Fellow in Bioethics at the University Center for Human Values, Princeton University.
Davis noted that during his three-year tenure as director of a national bioethics advisory body, he never heard the term “democratic deliberation.” But he believes that active citizen participation in bioethics issues is important and should be encouraged. At Geisinger, he said, he has been involved in several efforts to engage patients and elicit their views on research issues that affect them. For example, Geisinger in 2006 established a biobank after conducting a survey to assess community attitudes toward genetic research and approaches to patient consent.
Schwartz spoke to how previous national bioethics bodies in the United States have sought public engagement as part of their deliberative process. There has been, he said, significant variation in how commissions have approached this objective. Some commissions merely provided public notice of their meetings and made their meeting minutes available to the public. In 1994, the National Advisory Committee on Human Radiation Research went much further, actually holding meetings in affected communities and reaching out to interview individuals and families who had participated in radiation research. The National Bioethics Advisory Committee had three public members, a requirement written into its charter.
Both Davis and Schwartz encouraged the Bioethics Commission to consider applying democratic deliberation to its own work as a way to increase public engagement in bioethics issues.
“It has to be more than just doing it in public,” Davis said. He noted that he’s attended commission meetings with 400 people in attendance, as well as others with only 10 attendants. “I worry about what it means to do ethics in public when there are only 10 people in the audience.”
Schwartz agreed. “Trying to systematically understand the concerns, the hopes, the worries of citizens at-large seems a good thing,” he said.
After a short break, we will hear from three speakers who will explore how to bring theory on public engagement with bioethics into practice.