The Boundaries of Impure Science

The production of biomedical knowledge about the causes of and treatments for AIDS cannot be understood except with reference to a scientific field that is unusually broad and public and the site of an extraordinary degree of contestation. The shifting dimensions and porous borders of this field are not predetermined by any essential characteristics of science; rather, they become evident to the analyst by means of tracing the rebounding pathways of influence and engagement.^[1] That crucial debates about AIDS are resolved through credibility struggles within a field of this sort is readily demonstrated by the dynamics of the causation controversies described in part one. An initial process of closure by virologists (the "black-boxing" of the HIV hypothesis) was strengthened through ratification by biomedical institutions, public health organizations and governmental bodies, the mainstream media, and grassroots AIDS organizations. Certainty about the causal role of HIV solidified before all details of the putatively required evidence were obtained, precisely because the hypothesis was plausible, the claimants were credible, and the viral hypothesis satisfied the interests of various players, both "insiders" and "outsiders." Dissenting voices were isolated until the appearance of Peter Duesberg with his impressive scientific credentials. Yet Duesberg's article in Cancer Research was ignored until it was taken up by a group of lay supporters who publicized the controversy. Mass media coverage then led directly to Duesberg's presentation of his arguments in the pages of Science and the Proceedings of the National Academy of Sciences . And these scientific publications, in turn, "proved" Duesberg's credibility to many laypeople and reporters while attracting the interest of other scientists such as Kary Mullis, Robert Root-Bernstein, and Walter Gilbert. It seems likely that without the sustained, interactive participation of scientists, the mass media, and voices within the AIDS movement, the controversy simply would not have achieved significance, either socially or scientifically, and the "black box" ("HIV causes AIDS") would never have been reopened for consideration.

Certainty and uncertainty about the efficacy of antiretroviral drugs (the subject of part two) are even more obviously collective products and outcomes of credibility struggles. Principal investigators of clinical trials have made claims and counterclaims. Government agencies and advisory bodies have assessed risks and benefits. Physicians have believed or disbelieved and have conveyed their assessments to patients.

Patients have complied with study protocols or disobeyed them and have demanded drugs or rejected them. Grassroots publications have bypassed the traditional pathways of publication in science, spreading information and opinions about treatments to patients around the world. Treatment activists have challenged the calculus of risks and benefits, and by becoming "lay experts" they have helped change the rules governing the kinds of evidence required to determine efficacy. It was in the nexus of interactions among these principals that facts were made, expertise constructed, and social order forged.

This analysis suggests the need for new approaches to the study of the politics of knowledge-making in scientific controversies with overtly public dimensions. Analysts of science and medicine should attend to the strategies pursued by lay actors in their attempts to speak credibly about science and medicine—how they frame arguments, how they disseminate scientific information, how they build their own expertise, and how they enlist supporters behind them. In particular, while the analysis of social movements has been commonplace elsewhere, it has been relatively underdeveloped in both the sociology of medicine and the sociology of science.^[2] The case of AIDS activism suggests that social movements can pursue distinctive forms of participation in science and, conversely, that the engagement with science can shape such movements in powerful ways. An extended study of the relation between biomedicine and social movements could provide a deeper and more comprehensive analysis of the construction of medical knowledge and the transformation of medical practice.