Impure Science: AIDS, Activism, and the Politics of Knowledge

Front Cover
University of California Press, Dec 9, 1996 - Medical - 480 pages
In the short, turbulent history of AIDS research and treatment, the boundaries between scientist insiders and lay outsiders have been crisscrossed to a degree never before seen in medical history. Steven Epstein's astute and readable investigation focuses on the critical question of "how certainty is constructed or deconstructed," leading us through the views of medical researchers, activists, policy makers, and others to discover how knowledge about AIDS emerges out of what he calls "credibility struggles."

Epstein shows the extent to which AIDS research has been a social and political phenomenon and how the AIDS movement has transformed biomedical research practices through its capacity to garner credibility by novel strategies. Epstein finds that nonscientist AIDS activists have gained enough of a voice in the scientific world to shape NIH–sponsored research to a remarkable extent. Because of the blurring of roles and responsibilities, the production of biomedical knowledge about AIDS does not, he says, follow the pathways common to science; indeed, AIDS research can only be understood as a field that is unusually broad, public, and contested. He concludes by analyzing recent moves to democratize biomedicine, arguing that although AIDS activists have set the stage for new challenges to scientific authority, all social movements that seek to democratize expertise face unusual difficulties.

Avoiding polemics and accusations, Epstein provides a benchmark account of the AIDS epidemic to date, one that will be as useful to activists, policy makers, and general readers as to sociologists, physicians, and scientists.

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Selected pages

Contents

POINTS OF DEPARTURE
183
Clinical Trials Take Center Stage 19861987
196
DRUGS INTO BODIES
210
A KnowledgeEmpowered Movement A LAB OF ONES OWN
218
THE CRITIQUE OF PURE SCIENCE
237
Activism and the Manufacture of Knowledge 19891991
248
DILEMMAS AND DIVISIONS IN SCIENCE AND POLITICS
267
Inside and Outside the System
282

The Triumph of Retrovirology 19821984
68
HIV AND THE CONSOLIDATION OF CERTAINTY
81
HIV as Obligatory Passage Point
92
REOPENING THE CAUSATION CONTROVERSY
107
RED FLAGS AT THE ACADEMY
129
THE DEBATE THAT WOULDNT DIE
145
Whither the Controversy? 19921993
165
Causation and Credibility
172
THE POLITICS OF TREATMENT
181
CLINICAL TRIALS AND TRIBULATIONS
297
MORE PIECES OF THE ELEPHANT
312
CREDIBLE KNOWLEDGE HIERARCHIES OF EXPERTISE AND THE POLITICS OF PARTICIPATION IN BIOMEDICINE
332
The Transformation of AIDS Research
339
The Legacy of AIDS Activism
348
METHODOLOGICAL APPENDIX
357
NOTES
363
INDEX
447
Copyright

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Page 359 - What it really does is to entertain the claims to attention of local, discontinuous, disqualified, illegitimate knowledges against the claims of a unitary body of theory which would filter, hierarchize and order them in the name of some true knowledge and some arbitrary idea of what constitutes a science and its objects.
Page 66 - Like helpless mice we have peremptorily, almost inexplicably, relinquished the one power we so long fought for in constructing our modern gay community: the power to determine our own identity. And to whom have we relinquished it? The very authority we wrested it from in a struggle that occupied us for more than a hundred years: the medical profession.
Page 386 - Acquired immunodeficiency syndrome, opportunistic infections, and malignancies in male homosexuals. A hypothesis of etiologic factors in pathogenesis - Sonnabend J..
Page 26 - They frame, or assign meaning to and interpret, relevant events and conditions in ways that are intended to mobilize potential adherents and constituents, to garner bystander support and to demobilize antagonists.
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Page 444 - Michel Foucault, The Order of Things: An Archaeology of the Human Sciences (New York: Vintage Books, 1973), 387. CHAPTER 3: VIRTUAL SEX 1. Michael Saenz, "The Carpal Tunnel of Love: Virtual Sex with Mike Saenz" (interview by Jeff Milstead and Jude Milhon), Mondo 2000 4 (nd): 143.
Page 184 - The government has responded to the experience of domestic bioterrorism with a major increase in funding for the National Institute of Allergy and Infectious Diseases (NIAID) of the National Institutes of Health...
Page 208 - We condemn attempts to label us as "victims," which implies defeat, and we are only occasionally "patients," which implies passivity, helplessness, and dependence upon the care of others. We are "people with AIDS.
Page 189 - Everyone detected with AIDS should be tattooed in the upper forearm, to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals.

About the author (1996)

Steven Epstein is Assistant Professor of Sociology at the University of California, San Diego. The work on which this book is based won the American Sociological Association's award for best dissertation of the year.

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