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.
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.
"Amid the dozens of books about AIDS, one stands out—Impure Science. . . . Epstein has documented the fast-moving history of the epidemic's first years in an eloquent, readable narrative. . . . Intelligent and original."—Phyllida Brown, New Scientist
"Important, timely, and well written."—Paul Volberding, New England Journal of Medicine
"A masterly book that displays the powers of sociological imagination in the face of an unyielding human crisis." --Tom Gieryn, Contemporary Sociology
"[A] remarkable book . . . Here is a study marked by scrupulous attention to detail that is at the same time almost breathtaking in its scope and proving in its analysis. It is at once a fine contemporary history of science, a sociology of knowledge, and an account of the emergence and fate of a social movement driven by rage and passion. . . . What makes Impure Science so good [and] so important to read is that it is fiercely honest."—Science
"[A] lucid, balanced and impressively well-documented study. . . . The book condenses a formidable amount of information by chronicling almost month-by-month two interlinked developments in the fight against AIDS: first, the search for the cause of the disease and, second, the effort to treat its victims. The diarist’s approach to relating this history pays handsome dividends because it allows Epstein to show how every phase of scientific discovery was deeply influenced by people with AIDS, who came to constitute a new kind of social movement in the landscape of American biomedical politics."—American Scientist
"Important and compelling. . . . Epstein’s larger story tells how nonscientists not only passed into the inner sanctums of scientific research but forced change in the very procedures scientists rely on to measure and interpret their work. . . . Epstein’s book raises challenging questions about how relations between medical science and patient communities should be managed."—The Sciences
"Epstein takes a thorough, scholarly, and unimpassioned approach to his subject matter as he lays out the history of AIDS research and the democratization of medical research in general."—Science News
"[Epstein's] sobriety is his strength; the absence of grinding axes is reassuring, especially for the general reader, who may not be immersed in the dense controversies at the center of AIDS research. . . . Epstein's book arrives at an important moment in the brief history of AIDS: these new drugs, developed and tested with the advice of activists, hold the promise of transforming AIDS (at least in the developed world) from an always-fatal disease to a manageable, chronic condition."—New York Times Book Review
"Epstein argues that knowledge—and power—is gained through the struggle for credibility. Using the AIDS saga as a case history, he meticulously reconstructs how activists, researchers, policymakers, drug companies and physicians maneuvered to obtain recognition and influence to save lives and at times protect their own reputations and profit margins. . . . Intriguing."—Washington Post Book World
"A thorough and often dramatic account of the many ups and downs that have marked the battles to control the epidemic during the past 15 years. . . . In his carefully documented account, Epstein recalls many of the major controversies that have marked the AIDS epidemic. . . . What is most instructive in Epstein’s book, however, is his analysis of how powerfully well-informed, militant and organized advocates can affect the distribution of government money and influence the biomedical establishment in its strategies against a single disease. . . . ‘Impure Science’ proves definitely how consumers, armed with thorough knowledge, can influence public health policy, budget funding and even academic research toward their own goals in combating the diseases that threaten their lives."—San Francisco Examiner & Chronicle
"Epstein unites approaches from social studies of social movements and, in so doing, suggests directions for the development of a more comprehensive inquiry into the politics of knowledge in modern Western societies."—Choice
"Epstein provides an exhaustive analysis of how credibility is established within the field of science. . . . Epstein offers a particularly fascinating examination of the development of 'expertise' among the AIDS treatment activists, who eventually played a significant role in changing the methodology of clinical drug trials."—Library Journal
"The best empirical piece of work on the AIDS epidemic that I have read—detailed, well-informed, and expressed in lucid and accessible prose."—Charles E. Rosenberg, University of Pennsylvania
"This study surpasses all the best current writing in the AIDS field and bids fair, in my opinion, to set the standard for some time to come—not only in relation to the policy problems and the scientific and political conflicts associated with AIDS but also in the academic arenas of sociology of science, sociology of knowledge, and sociological theory."—Virginia Olesen, University of California, San Francisco
Winner, C. Wright Mills Award, Society for the Study of Social Problems
Robert K. Merton Professional Award, American Sociological Association