Protection of Participants in Genetic Research Tops the Agenda of A New Presidential Ethics Panel

President Bill Clinton’s new National Bioethics Advisory Commission will hold its first meeting on October 4 in Washington, DC, with APS fellow Diane Scott-Jones of Temple University among its 15 members.

The Commission’s task is to study and advise on ethical issues involved in research with human subjects. Its immediate charge will be to consider the management and proper use of genetic information in ways that best protect the rights and welfare of human participants. It is empowered to hold hearings, conduct inquiries, and establish subcommittees. The panel includes behavioral, biological and medical specialists, as well as community representatives and members from the fields of philosophy and theology. It is chaired by Princeton University President Harold T. Shapiro, an economist who was a member of the President’s Council of Advisors on Science and Technology in President George Bush’s Administration.

Ethics as Good as Our Science

Scott-Jones said she agreed with the goal that Jack Gibbons, director of the White House Office of Science and Technology Policy set for the commission when he said, “We want to make sure that our ethics are as good as our science.”

To reach for that goal, Scott-Jones said, “we have to educate people in the field and keep these issues salient for us. They are not easy issues. We have to encourage the discussion of ethical issues and be aware of a variety of points of view on them. We have to engage researchers, users of research, and people who are participants in research to involve them in discussion of what is ethical and what we can properly do as scientists in our pursuit of knowledge.”

For psychologists, the task is “to make ethics part and parcel of what we do when we implement our research projects. Ethics should not be something that stands apart or something that we only consider in the abstract. Rather, it must be part of the day-to-day process of research,” she said. In fact, true to her beliefs, Scott-Jones says she makes certain she discusses ethics on day-one of the graduate and undergraduate courses she teaches in the developmental division of the psychology department at Temple University.

Scott-Jones is a member of the joint APS/American Psychological Association task force to revise the Ethical Principles in the Conduct of Research with Human Participants originally published in 1982. The latest revision is nearing final draft form, she said.

Formerly chair of the ethics committee of the Society for Research in Child Development, Scott-Jones is currently editor of the Journal of Research on Adolescence, the official journal of the Society for Research on Adolescence. She also serves on the MacArthur Foundation’s Research Network on Successful Pathways Through Middle Childhood, which she describes as “an interdisciplinary group examining what we know about how children move successfully through the years of middle childhood.” In the network she has taken an active role in looking at “what we know about families from diverse ethnic groups.” She said that “with immigration and changing demographics, it’s particularly important now to try to understand what those issues mean for children.”

Varying Records of Accomplishment

The new presidential bioethics panel is the latest incarnation of several such commissions appointed over the past 22 years. But they have varied considerably in their effectiveness, as pointed out in The Washington Post in a July 20 story.

For example, the first panel, created by Congress in 1974, rapidly issued recommendations governing the use of human fetuses in research that were soon codified in federal regulations. Before its four-year charter expired, the panel established the bases for federal regulations on the protection of prisoners and children in medical research.

On the other hand, the panel created by Congress 1985 sank into endless bickering over abortion rights. It expired after four years without accomplishing even its first piece of business. What are the prospects for successful achievements by the new ethics panel? Scott-Jones says, “Of course, anyone who agrees to devote time to an interdisciplinary commission on ethics fully expects the time to be well spent.”