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Probing Ethical Aspects of Biomedical Research

Debates about stem cell research and cloning continue to rage as Congress considers laws to address these new technologies. For scholars and public health professionals interested in grappling with such questions, Columbia's Center for Bioethics convened a conference titled "Ethics of Genetics in Research: Perils and Promises," with funding from the National Institutes of Health's National Human Genome Research Institute.

Held May 19-20 at the Hammer Health Sciences Building at 168 Street in Harlem, the event brought together geneticists, bioethicists, health care providers and members of Columbia's Institutional Review Board (IRB) for intensive discussion of the latest developments in genetic research and the ethical, social and policy questions these developments raise.

In a series of lectures and interactive workshops cosponsored by Public Responsibility in Medicine and Research (PRIM&R), participants discussed such contentious issues as informed consent and privacy concerns; the role of the IRB in protecting research participants; the debate over whether race should be seen as a genetic reality or social construct; new developments in the genetics of obesity; and the ethical implications of genetic research on mental disorders such as schizophrenia, depression, autism and Alzheimer's disease.

Mozambique Woman
Nearly 15 percent of Mozambique's population is estimated to carry HIV, including this 27-year-old woman with AIDS.

Zena Stein, Columbia professor emerita in public health (epidemiology) and psychiatry, delivered the keynote address on "Conducting Genetic Research Abroad."

A native of South Africa, Stein has long advocated for the development of contraceptive methods that are effective, safe and acceptable to women living at high risk of contracting the HIV virus. She, along with her husband, colleague and fellow South African Mervyn Susser (also a professor emeritus of Columbia's health sciences faculty), is the scientific director for the Africa Center for Population and Reproductive Research, which is engaged in fighting the AIDS epidemic ravaging South Africa's black population.

Pointing to the recent findings showing that women are especially vulnerable to the HIV virus -- more than half of new HIV infections in Africa occur in women -- Stein stressed the importance of empowering young women to protect themselves from HIV infection. Like many AIDS researchers, she would like to see developed a safe and effective microbicide -- such as a cream, gel, foaming tablet or vaginal ring -- that acts as an invisible condom.

She has no illusions, however, about the difficulty of seeking the consent of African women to take part in HIV clinical trials. Recalling her experience of serving on the bipartisan commission established by South African president Thabo Mbeki to investigate whether the nation's many tragic deaths in the wake of the ending of apartheid could be attributed to malnutrition and impoverishment, not AIDS, Stein said that the government's denialist policy made it extremely difficult for scientists like herself to conduct their research, much less to begin the steps toward obtaining informed consent. At the time of the commission's investigations, HIV-positive women were disqualified from taking part in such studies, she said.

In the conference's final panel, on the genetics of mental health and behavioral research, Gerald D. Fischbach, who recently stepped down as dean of Columbia's medical center, discussed informed consent as it applies to research on autism. In this case, the problem is the opposite: Parents of autistic children can be too eager to sign them up for research trials because of their desire for relief, he said. Therefore, he would advocate a more tempered pace in the search for new treatments.

Published: Jun 16, 2006
Last modified: Jun 16, 2006