Conceptualizing Aids: Some Intellectual Debts
Although books and articles analyzing the AIDS epidemic are legion, few have studied the way that scientific knowledge about AIDS is constructed through controversy and claims-making. Indeed, some of the most well-known discussions of the social dimensions of the epidemic, such as Randy Shilts's And the Band Played On , obscure as much as they clarify about the construction of knowledge regarding AIDS. Though moving, Shilt's book offers a teleological account of science: the "certainties" of 1987 are projected backward onto past moments in the epidemic, and those who, at the time, endorsed arguments that would later become authoritative are labeled heroes, while those with views that were destined to fall out of favor are characterized as wrongheaded and even dangerous. Though often damning of the conduct of science in the United States, Shilts never moves beyond the classic liberal position that the institutions of science would function just fine if only "politics" (for example, the anti-gay attitudes of a Republican administration) and personal motivations (such as scientific ambition) could be kept from interfering. Such
views are in sharp contrast to theoretical perspective that portray science as normally and inevitably infused with politics of various kinds—perspectives that suggest we analyze knowledge in relation to interests, strategies, and mechanisms of claims-making.
Other mainstream accounts from a traditional science journalism perspective seem to miss much of what is most distinctive about the case of AIDS. Steve Connor and Sharon Kingman's The Search for the Virus , for example, is full of useful information about the scientific arguments and hypotheses advanced over time but has nothing to say about anything happening outside of the scientific field narrowly construed. Bibliometric analyses of AIDS publications are likewise helpful in understanding shifts in emphases over time, while Henry Small and Edwin Greenlee's "co-citation" study of AIDS research shows the linkages among different scientific journal articles and biomedical subspecialties. These accounts, however, begin with the a priori assumption that the "field" that generates AIDS knowledge encompasses only mainstream researchers and mainstream scientific journals. Analyses that, for example, take seriously the role of grassroots treatment publications in the dissemination of scientific knowledge about AIDS are few and far between.
Some of the earliest writers on social aspects of AIDS, including Dennis Altman and Cindy Patton, have perspectives closer to my own, insofar as they devote close attention to questions of scientific controversy, expertise, and the politics of gay communities. Patton's subsequent work in her book Inventing AIDS and Altman's in Power and Community are crucially concerned with the democratization of knowledge and the politics of expertise in ways that I have found insightful and stimulating. Also related to my own work is that of Paula Treichler, who, in a series of articles, has analyzed the scientific discourse of AIDS to reveal the social construction of medical knowledge. Although she has not comprehensively or systematically analyzed the causation and treatment controversies, her insightful writing on both of these topics has informed my own work. Various analysts, such as Susan Sontag, Simon Watney, and Emily Martin, have studied the discursive construction of AIDS, while Watney and a number of others have provided excellent description of the framing of AIDS in the mass media.
There have been surprisingly few detailed analyses of the AIDS activist movement, though there are notable examples from which I have benefited significantly. While the responses of gay and lesbian
communities to the epidemic have been documented fairly thoroughly, other constituencies, such as women, African-Americans, Haitians, prostitutes, and injection drug users, have only recently become subjects of extensive investigation (and others, such as people with hemophilia, remain to be investigated). The innovative role of health professionals in the epidemic has also been given less attention than one might expect, although analysts such as Charles Bosk and Joel Frader, Mary-Rose Mueller, Robert Wachter, and Charles Rosenberg have made important contributions. Finally, a number of authors have studied institutional and organizational dimensions of the social response to AIDS, while others have focused usefully on questions of meaning and social identity.
Several writers, including Stephen Murray and Kenneth Payne, have sought to describe and interpret the initial medical speculation about AIDS in the early 1980s (the subject of my chapters 1 and 2). By contrast, there has been surprisingly little scholarly attention paid to Duesberg and the other HIV dissenters (my chapters 3 and 4), the primary exception being the work of Joan Fujimura and Danny Chou. The early impact of AIDS activism on the conduct of clinical trials (see my chapters 5 through 7) has been discussed in a number of works, most of which appeared in the early 1990s—in greatest analytical detail by Peter Arno and Karyn Feiden. This latter group of analyses, each of which has contributed significantly to my understanding of treatment issues, has its strengths and weaknesses but tends overall to bracket consideration of knowledge claims as such. The authors pay little attention to the constitution of scientific knowledge and the relation between frameworks of knowledge and particular technological products (drugs). By contrast, my analysis of treatment controversies tries to bring together, in a systematic way, concerns with drug testing and approval, scientific strategies, and processes of constructing facts and beliefs.
The extensive literature on the social aspects of AIDS not only informs my analysis at every turn but its existence also provides me with a justification, of sorts, for the gaps and omissions in my own account. Let me briefly enumerate some of the most glaring. First, although the United States occupies a dominant position and English-language sources tend to establish the terms of the debate, the scope of AIDS research is indisputably international. However, the resources of any one investigator are finite, and given an overwhelmingly large subject I have been forced to make choices. Therefore I have generally restricted
my focus to the United States, even where such restriction necessarily does some violence to the true empirical boundaries of the "field" constitutive of AIDS knowledge. In considering activism, moreover, I have focused primarily on gay activists, who have been most visible and forceful. Even there I have tended to emphasize (or perhaps overemphasize) the actions and perspectives of New Yorkers and San Franciscans, who have indeed set the tone for national debates. (For more information on sources consulted, refer to the Methodological Appendix.)
Second, in my discussion of treatments in part two of the book, I restrict my attention largely to the development of anti-HIV therapeutic agents (antiretroviral drugs) because this provides me with a relatively well-bounded case study in an area that has received heavy scientific and media attention and a great deal of activist involvement. As a result, I say little about the development of drugs to treat opportunistic infections or boost immune functioning or about the development of vaccines (either preventive or therapeutic) or about non-Western therapies. It should be clear that activists have participated in debates about all of these dimensions of research and treatment, and the debates surrounding them cannot wholly be dissociated from those concerning the antivirals. I leave it to others to explore these topics in detail.