able were engaged at some level, but rather that representatives of vulnerable populations were sought out as collaborators. In the first years of the epidemic this process was facilitated by the existence of a politically organized, sophisticated gay community with the professional and intellectual resources that were crucial for the process of collaboration. It was the political strength and potential influence of the gay community and the widespread recognition that effective AIDS policy would require its involvement that necessitated an effort to engage it in a collaborative process.

In this paper I would like to examine the role of consultation between ethicists and those at risk for HIV infection in confronting a series of critical policy questions raised by the AIDS epidemic, each of which entailed a potential clash over the interests of privacy and individual rights on the one hand and communal well-being on the other. Five such instances will be examined: the development of guidelines for the protection of the subjects of epidemiological research, 1984; the development of guidelines for HIV screening, 1986; the development of policy options on testing of pregnant women and newborns, 1990; the development of a consensus policy on clinical research, 1991; policy recommendations for the control of tuberculosis, 1992.*

CREATING GUIDELINES FOR CONFIDENTIALITY IN RESEARCH ON AIDS

That the debate over bathhouse closure, with its implications for restrictions on gay sexual behavior, and the relevance of the public health power of quarantine to the control of AIDS would have directly engaged gay political leaders is not surprising. More unusual was their close and watchful involvement in the conduct of public and private research into the etiology, course, and epidemiology of AIDS even before HIV was identified. Fear of being labeled, of being incarcerated, and of being deprived of access to employment and insurance marked the tension between the representatives of the gay community concerned with privacy and researchers who asserted that the public health required the conduct of epidemiological studies based upon the most intimate details about AIDS patients' lives and identities. The conflict arose early as the Centers for Disease Control sought the names of AIDS patients reported to public health authorities throughout the country. Recognizing the critical importance of longitudinal studies to a broad research program, gay leaders were nevertheless fearful that providing federal health officials with such data would

*  

In all but the effort to draft recommendations on the testing of pregnant women and newborns, I was a direct project participant. In the projects on epidemiological research, HIV screening, and tuberculosis, I was a project co-director. Thus this paper relies on and has all the strengths and weaknesses of a study based on participant observation.



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