The Human Genome Project and Minority Communities: Ethical, Social, and Political Dilemmas

Zilinskas and Balint and their contributors examine the divisions between minority groups and the scientific community, particularly in the area of medical and genetic research. Minorities have reasons to be skeptical of medical research in general and genetics research in particular. The sad history of the Tuskegee experiment, in which black men with syphilis were left untreated so that the course of the disease could be studied, undermined confidence in the ethics of medical researchers. More recently, publication of The Bell Curve reanimated controversy over purported genetic distinctions among the races that could have powerfully negative social implications. In contrast, as the essays make clear, the Human Genome Project, conducted in accordance with the highest ethical standards, has the potential to make dramatic positive contributions to the health of all human beings. Members of minority communities in particular--who statistically are at high risk of adverse health outcomes in the United States--have much to gain from innovative medical diagnostics and therapies that will result from the study of human genetics. Therefore, if we are to benefit fully from this new knowledge, it is vital that the distrust, skepticism, and misconceptions relating to genetics research be overcome. This is a provocative collection for scholars, students, researchers, and community leaders involved with minority and public health issues.