New book asks ethical questions about human subjects research

November 02, 1999

CHAPEL HILL -- For years, conscientious scientists conducting all kinds of research involving human subjects -- from anthropology to public health to clinical medicine -- have bumped up against deep ethical questions about the people they study, says a University of North Carolina at Chapel Hill faculty expert.

"Time and time again, researchers are confronted by questions that are not addressed by the rules and regulations that govern research," says Nancy M.P. King, professor of social medicine at the UNC-CH School of Medicine. "These questions arise because research involves relationships -- sometimes long-term relationships -- with the individuals and communities who serve as subjects. Researchers must think about questions like, 'Who sets the focus and the design of the research?' ' Who represents a specific group or community?' and 'Who speaks for them?'"

Those questions and others related to a new way of ethical reasoning regarding human subjects were the focus of a 1995 conference at UNC-CH, "From 'Regs' to Relationships: Re-examining Research Ethics," organized by King, Dr. Gail Henderson, also professor of social medicine, and Dr. Jane Stein, a public health adjunct faculty member.

The five case studies presented during that conference, along with new case material and essays on research ethics, are featured in the first volume of a new University of North Carolina Press series, "Studies in Social Medicine." Edited by the three women, "Beyond Regulations: Ethics in Human Subjects Research" examines new ways to perceive and address moral problems in all human subjects research.

Initially, the conference goal was to address ethical problems that arise when scientists try to apply federal regulations governing human studies in cross-national, cross-cultural settings. But it soon became clear that the focus should be much broader, King says.

"Challenges to traditional moral principles have been sounded across a broad sweep of academic disciplines, echoing a wide variety of intellectual efforts to discern and define new ways of understanding moral issues through consideration of their complex social, cultural and political contexts," the authors write. "These same concerns have caused us to recognize that, in effect, all research is 'cross-cultural.'"

"Beyond Regulations" distills arguments from conference presentations and discussions, including an address by keynote speaker Ruth Macklin. Macklin contends that universal moral truths apply to research with human subjects and that researchers can both achieve their goals and respect subjects by applying those universals alone.

Many conference participants, including the editors, weren't completely satisfied with that viewpoint. The cases, commentaries and essays thus focus on ethical reasoning based not only on application of universal moral principles, but also on close examination of relationships in research and the context in which research takes place. "We (the editors) are not fans of moral relativism, but we think that the notion of an ethics of relationships in research is worth pursuing because it might bring us closer to solving some of the peripheral problems crowding our field of vision," they say.

The new book includes detailed case studies the editors hope will help a wide audience of researchers and students in all fields where research involves human subjects, including social science, medicine, health and the humanities. One case concerned a project examining community and individual perceptions of medical research and HIV/AIDS drug trials. Scholars looked at the Durham black community, young gay men working with the University of California in San Francisco and drug users working with the University of Pennsylvania in Philadelphia.

"The reason a project like this is so interesting and so complicated is that it raises questions of trust between potential subject groups and researchers and stigmatization of subjects, depicting the kinds of questions conscientious researchers have to ask themselves about how to work with human subjects," King says.

Another case study tells what happened when an anthropology graduate student began to study a particular Jewish community in Curacao. "The community leaders said to him, 'We want a big say in what you do.' He faced the question of whether and how to change from the familiar model of relationship between powerful researchers and passive subjects and their communities," Henderson says. Questions about relationships between researchers and communities have also arisen in public health and epidemiological research and even in biomedical research.

"Certainly there has been controversial research in North Carolina, where researchers have asked themselves - or should have - questions like, 'Will my research put this community at risk? How should I protect them? What happens after I'm finished?'" King says.

In biomedical research of an "emergency" nature, communities have recently been given a role that is not well understood, Stein says. Regulations allow medical research in emergencies when there isn't time to obtain consent from patient-subjects or their families, as long as the research is preceded by community consultation and is followed by public disclosure. "For this kind of emergency research, how is community defined? And how are we to know when adequate consultation has occurred?" Stein says.

"We are looking at a very practical set of goals: to help researchers respect and work with subjects in the best possible way, to get the data they need and to connect their concerns with a new and different model of moral reasoning," Henderson says.
Note: King, Henderson and Stein can be reached at (919) 962-1136, 962-1136 and 929-1614, respectively.

Contact: David Williamson, 962-8596.

University of North Carolina at Chapel Hill

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