Social Equity, Group Identity, and the Management of Difference in Research on Human Populations

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This project analyzes the management of difference and the concern with social equity in scientific research on human populations. Specifically, the project tracks the incorporation of gender and race as variables in the design and evaluation of biological and biomedical research. While some argue that these policies promote research that is both more equitable and more capable of producing adequate, generalizable data, others suggest that such requirements interfere with the conduct of rigorous research. The central case study will be the recent mandates to include women and members of racial minority groups in experiments such as randomized clinical trials. In addition, the project will analyze the extent of concern with issues of gender and racial diversity in other domains of biological research, including the Human Genome Project. The project seeks to identify the causes and consequences of the recent push for the inclusion of diverse subject populations in biomedical and biological research. It asks how, and in what ways, scientific institutions should be sensitive to conceptions of social and bodily difference. And the study explores the practical consequences of this management of difference for the acquisition of biomedical and biological knowledge about the human body, as well as for broader cultural understandings of gender and race as bodily markers and determinants of social identity. The methods to be employed include: 1) analysis of government records and content analysis of published reports of clinical trials to measure changes in the demographic diversity of biological experiments on human subjects; 2) open-ended, semi-structured interviews with researchers, government officials, politicians, and activists to reconstruct the history of recent policy changes regarding the inclusion of women and racial minorities in biomedical research; and 3) database searches to retrieve relevant articles in the mass media, the scientific press, the Congressional Record. and other sources. This study holds significance for scientists, practitioners of science and technology studies, and the public at large. For scientists, the project has considerable relevance because it will analyze the causes and consequences of policy shifts that centrally affect their work. For practitioners of science and technology studies, the project contributes to debates concerning the public negotiation of the credibility of experiments (particularly experiments conducted on human subjects, such as randomized clinical trials) as well as contributing to research on the public accountability of science and the relation between science and social movements. For the general public, the study analyzes the impact of `identity politics` upon actual scientific practice. Study findings will be presented in the form of journal articles directed to specialized audiences, presentations at conferences, and a book intended for a wide audience of academics and educated lay readers.