Unformatted text preview: o The Construction f Lay A Expertise: IDSActivism andthe Forgingof Credibility T in the Reformof Clinical rials
University of California, San Diego In an unusualinstanceof lay participationin biomedicalresearch,U.S. AIDStreatment t activistshave constituted hemselvesas credibleparticipantsin theprocess of knowledge construction,therebybringingabout changes in the epistemicpractices of biomedical research.This article examinesthe mechanismsor tactics by which these lay activists a i t have constructedheircredibilityn theeyes of AIDSresearchers ndgovernment fficials. o It considers the implications f such interventionsor the conductof medical research; f o i examinessome of the ironies,tensions,and limitations n the process;and arguesfor the t s o importance f studying ocial movements hatengage withexpertknowledge. One of the most striking aspects of the conduct of AIDS research in the United States is the diversity of the players who have participated in the construction of credible knowledge. Inside of a large and often floodlit arena with a diffuse and porous perimeter, an eclectic assortment of actors have all sought to assert and assess claims. The arena of fact making encompasses not just immunologists, virologists, molecular biologists, epidemiologists,
AUTHOR'S NOTE: This work was supportedby a postdoctoralfellowship in the Science Studies Programat the University of California,San Diego, and a research grant from the Academic Senate at UCSD. An earlierversionwas presentedat the 1993 annualmeeting of the Society for Social Studiesof Science at PurdueUniversity,WestLafayette,Indiana,November, 19-21, 1993 where the audienceprovidedhelpful comments. I am gratefulto Marc Berg and Monica Casperfor extensive editorialsuggestions and for theirefforts in organizingthis issue a of thejournal.Thanksalso to Olga Amsterdamska ndthe anonymousreviewersand to Michael Burawoy,Hector Carrillo,Susan Cozzens, Troy Duster,AndrewFeenberg,Tom Gieryn,Jerry Karabel,David Kirp,HarryMarks,BrianMartin,Mary-RoseMueller,Evelleen Richards,David Rier,Leslie Salzinger,Steven Shapin,Leigh Star,YuvalYunay,and audiencesat the University S of Pennsylvaniaandthe Universityof California, anDiego, forusefulcriticismandsuggestions.
Science, Technology,& HumanValues,Vol. 20 No. 4, Autumn1995 408-437 ? 1995 Sage PublicationsInc. 408 ...
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- Reformof Clinical rials, Steven Epstein, Society for Social Studiesof Science, unusualinstanceof lay participationin