Dissertation Research: Construction of the Human Genome Diversity Project

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As the prominence of population genetics and studies of human diversity grows, issues concerning the science and politics of human genetic diversity research promise increasingly to confront policy makers, funding agencies, institutional review boards, scientists, and communities of potential research subjects. This dissertation research addresses these issues through a case study of the Human Genome Diversity Project. The Diversity Project, first proposed by population geneticists and evolutionary biologists in 1991, aims to archive a global sample of human genomes that would permit studies of both evolutionary and medical relevance. However, since its inception, the Diversity Project has been surrounded by controversy, and it still largely remains in the planning stage. The debates about the Diversity Project reflect deeper issues concerning the science and politics of group membership, definition, and voice. To illuminate these issues, the dissertation research project explores three key aspects of the controversy: the scientific debates about the nature and boundary of groups; the moral, social and technical debates about the ethics and validity of group consent; and the moral and social debate about whether and how Diversity Project subjects should participate in planning and implementing the Project. Ethnographic and interviewing methods will be used to investigate the extent to which these debates were intertwined, and how they interacted with the complex politics of North/South relations, race, and participation in contemporary liberal democracies. In so doing, the project will contribute to an emerging area of inquiry in science and technology studies that aims to provide detailed empirical analyses of the ways in which scientific knowledge and moral and social orders are "coproduced." The research will also add to the scholarly debate about the relationship between race and science by exploring the complex relations between scientific practices and the definition of categories of 'race.' Finally, the project will shed light on the public and scholarly discussions about minority participation in scientific research, group consent, and the nature of racial, ethnic and group identities in contemporary liberal democracies.