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Impure Science Impure Science http://content-backend-a.cdlib.org/xtf/view?docId=ft1s20045x&chunk.i... Preferred Citation: Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press, c1996 1996. http://ark.cdlib.org/ark:/13030/ft1s20045x/ Impure Science AIDS, Activism, and the Politics of Knowledge Steven Epstein UNIVERSITY OF CALIFORNIA PRESS Berkeley · Los Angeles · Oxford © 1996 The Regents of the University of California To my parents and to Héctor Preferred Citation: Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press, c1996 1996. http://ark.cdlib.org/ark:/13030/ft1s20045x/ To my parents and to Héctor Acknowledgments Researching a book about scientists, laypeople, and the nature of expertise could not help but spur me to reflect self-consciously on what it means to present myself as an "authority." To whatever extent I can offer a credible analysis of the politics of AIDS research, there is no mystery or magic behind my own expertise: I have benefited at every step from the labor of others who have helped me understand this material or whose work I have learned from over the years. I should therefore begin by acknowledging the researchers, activists, and government officials who fit me into overcrowded schedules and allowed me to interview them about their work and their ideas. They deserve my deepest thanks. I am indebted to my dissertation adviser, Jerry Karabel, who, at the University of California at Berkeley, supervised the dissertation on which this book is based. His thoughtful and judicious comments have challenged me and moved my work in fruitful directions. I am grateful, as well, for the efforts of my other dissertation committee members, Michael Burawoy, Troy Duster, and David Kirp, whose incisive observations often forced me to rethink my assumptions. Barry Adam, Héctor Carrillo, Adele Clarke, Louis Corrigan, Mark Jones, Brian Martin, Steve Murray, Ken Plummer, Leslie Salzinger, and Steve Shapin all took the time to provide me with substantial comments on drafts of the manuscript or portions of it at various stages along the way. Steve Shapin also dropped any number of useful hints over coffee and in the hallways. The final product would be of far poorer quality without the efforts of these individuals. I have also benefited from the insights of many other friends and ― xii ― colleagues with whom I have discussed this work, including Dennis Altman, Olga Amsterdamska, Marc 1 of 284 7/8/2006 6:33 PM Impure Science http://content-backend-a.cdlib.org/xtf/view?docId=ft1s20045x&chunk.i... Berg, Charles Bosk, Jane Camerini, Larry Casalino, Monica Casper, Nancy Chodorow, Jon Cohen, Susan Cozzens, Melinda Cuthbert, Marcy Darnovsky, Anni Dugdale, Ellie Ely, Ivan Emke, Barbara Epstein, Jeffrey Escoffier, Andy Feenberg, Melia Franklin, Joan Fujimura, Josh Gamson, Ty Geltmaker, Deborah Gerson, Tom Gieryn, Joe Gusfield, David Halperin, the late Carol Hatch, Karen Hossfeld, Leslie Kauffman, Philip Kitcher, Rebecca Klatch, Elizabeth Knoll, Cathy Kudlick, Kristin Luker, Harry Marks, Marcia Meldrum, Mary-Rose Mueller, Chandra Mukerji, Kevin Mumford, Sarah Murray, Cindy Patton, Trevor Pinch, Brian Powers, Jonathan Rabinovitz, Roddey Reid, Evelleen Richards, Alan Richardson, David Rier, Billy Robinson, Aron Rodrigue, Charles Rosenberg, Michael Rosenthal, Pam Rosenthal, Debra Satz, Beth Schneider, Andy Scull, Steven Seidman, Leigh Star, Arlene Stein, Nancy Stoller, Verta Taylor, Francine Twine, Chris Waters, Jeff Weintraub, Bob Westman, Andrea Williams, Ara Wilson, Alan Yoshioka, Yuval Yunay, the audiences at many conferences and talks where I have presented my work, and the anonymous reviewers of work I have submitted for publication. Barbara Marin and Linda Derksen provided invaluable assistance on statistical matters. Alex Boese, Linda Derksen, and Josh Dunsby painstakingly transcribed interviews. Sarah Groisser scoured the manuscript for typographical errors. Bill Walker of the San Francisco Lesbian & Gay Historical Society archives and Michael Flanagan of the D.A.I.R. archives in San Francisco assisted me in finding AIDS-related materials. Reference librarian Elliot Kanter of the University of California at San Diego applied his expertise to database searches. Peter Duesberg graciously permitted me free access to his personal archives. Mark Harrington, Jon Cohen, and Mary-Rose Mueller also provided access to materials. I am grateful to colleagues and students in the Sociology Department and the Science Studies Program at UCSD for furthering my education; to the administrative staff members in the department and the program for their technical assistance; and to my department chair, Tim McDaniel, for his support. For advice on publishing matters, I am indebted to Andy Scull and William Abrahams. My editor, Stanley Holwitz, has guided me through the publication process with a steady hand, and I have benefited from his good sense and accumulated wisdom. Others affiliated with the University of California Press, including ― xiii ― production editor Scott Norton and copy editor Bonita Hurd, contributed greatly to the final product. The dissertation on which this book is based was made possible by a Doreen B. Townsend Center for the Humanities Fellowship and a Spencer Dissertation Year Fellowship. Additional research and fundamental rethinking was accomplished under the auspices of a postdoctoral fellowship in the UCSD Science Studies Program, sponsored by a National Science Foundation grant. My capacity to bring this project to closure was then greatly enhanced by a UCSD Academic Senate Research Grant and a Chancellor's Summer Faculty Fellowship. Close friends in the San Francisco Bay Area, San Diego, and elsewhere provided their encouragement over the years. My parents and my sister gave their love and support. And my partner, Héctor, helped in innumerable and unforgettable ways. ― 1 ― Introduction Controversy, Credibility, and the Public Character of Aids Research It was the first day of classes at Harvard Medical School in fall 1988. As students arrived for the new semester, members of the Boston chapter of ACT UP (the AIDS Coalition to Unleash Power) took positions in front of the building. Equipped with hospital gowns, blindfolds, and chains, the activists broke into a chant: "We're here to show defiance / for what Harvard calls 'good science'!" While some of the demonstrators poured fake blood on the sidewalk, others presented the medical students with a mock "course outline" for an "AIDS 101" class. The outline listed discussion topics like: PWA's [People with AIDS]—Human beings or laboratory rats? AZT—Why does it consume 90 percent of all research when it's highly toxic and is not a cure? 2 of 284 7/8/2006 6:33 PM Impure Science http://content-backend-a.cdlib.org/xtf/view?docId=ft1s20045x&chunk.i... Harvard-run clinical trials—Are subjects genuine volunteers, or are they coerced? Medical elitism—Is the pursuit of elegant science leading to the destruction of our community?[1] This wasn't a large demonstration; indeed, it was a lesser episode in the annals of AIDS activism. But it suggested the contours of a ― 2 ― distinctive terrain. The concepts embedded in the "course outline" were relatively opaque, especially in contrast with the graphic symbolism of the protest—the blood and the chains. These were no simple slogans of the "Up with this , down with that " variety; each cryptic item hinted at arguments of some depth and complexity. In fact, the activist agenda reflected critical engagement with the nuts and bolts of clinical research into the Acquired Immunodeficiency Syndrome and a desire to take the science of AIDS as seriously as a deadly illness demanded. These protesters were not rejecting medical science. They were, however, denouncing some variety of scientific practice—"elegant" science, "what Harvard calls 'good science'"—as not conducive to medical progress and the health and welfare of their constituency. To the uninitiated, such a challenge might well be baffling: What would "inelegant" science look like, and why should anyone desire it? What would be the alternative to the "good science" that the medical students were absorbing in their lecture halls? What precisely were the activists claiming, both about the nature of AIDS and the nature of biomedical research? And from where did they derive the authority to make their allegations and proposals? This book is a study of how varied classes of AIDS experts, diverse conceptions of scientific practice, and distinct claims of knowledge about AIDS have all been generated out of relationships of conflict and cooperation in the United States since the early 1980s. Inside a large and often floodlit arena with a diffuse and porous perimeter, an eclectic assortment of actors has sought to assert and assess credible knowledge about AIDS: biomedical researchers and health care professionals of different stripes; activists, advocacy groups, and people with AIDS or HIV infection; health educators and social scientists; politicians and public health officials; government agencies and advisory committees; pharmaceutical and biotechnology companies; writers, journalists, and the institutions of the mainstream and alternative media. "What we know about AIDS" is the product of this elaborate, often heated, and in some ways quite peculiar complex of interactions. I seek to identify the pathways by which specific beliefs and spokespersons have become accredited
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