4_Epstein - Lay Expertise - 410 Science,...

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Unformatted text preview: 410 Science, Technology,& HumanValues between doctors and patients (Cicourel 1986; Freidson 1988; Katz 1984), and the tension between expertise and democracy within complex and differentiatedsocieties (Ezrahi 1990; Habermas1970; Petersen 1984). By insisting that AIDS clinical trials are simultaneouslysites of scientific researchandmedicalcare,AIDS activistsindicatethatthey understandmplici itly what some sociologists (Berg and Casper,this issue) have recentlybeen assertingprogrammatically-that medical therapeuticscannot fully be understood separatelyfrom questions of knowledge constructionand that our b conception of scientific practicecan be furthered y carefulattentionto the o local details of medicalwork.The importance f analyzingAIDS researchis heightened by the influence that AIDS activism appearsto be exerting, at least in the United States, on a new wave of health-relatedactivism-a " politics of identityorganizedby particular diseaseconstituencies"such as those sufferingfrom breastcancer,environmentalllness, or chronicfatigue. i In this article, I explore how AIDS activists in the United States have establishedtheir credibilityas people who might legitimately speak in the language of medical science. I focus specifically on interventionsby soo a called "treatment ctivists"into the design, conduct,andinterpretationf the clinical trials used to test the safety and efficacy of AIDS drugs.3This is an t areain which activistshaveenjoyedgreatsuccess in transforminghemselves into credible players-as marked,for example, by the presence in recent a years of AIDS treatment ctivists as full voting membersof the committees of the NationalInstitutesof Health (NIH) thatoversee AIDS drug developa mentandasrepresentativesttheFoodandDrugAdministration (FDA)advisory committee meetings where drugs are considered for approval.4 As the National ResearchCouncil of the NationalAcademy of Sciences noted (in a report otherwiseskepticalaboutthe transformative impactof the AIDS epidemicon c " U.S. institutions), not since randomized linical trials became the orthodox a h mode of clinicalinvestigation avethe mostbasicapproaches ndassumptions i b research ethodologies eenopento searching ritiquen thecontext c m regarding of an epidemicdisease"(JonsenandStryker1993, 111).5 I begin with a discussion of the study of scientific credibility in the interface between biomedical professionals and social movements. I then a o describethe uniquecharacteristics f the AIDS treatment ctivistmovement i o and analyzefourkey mechanisms r tacticsthattheseactivistshavepursuedn t constructing heir credibilitywithin biomedicine:the acquisitionof cultural o the o t competence, heestablishmentf politicalrepresentation, yokingtogether f o a a epistemological ndethicalclaimsmaking, ndthetaking f sidesin pre-existing c d methodological isputes.Finally,I pointto some of the implications, omplicaw tions,andironiesof the activistengagement ithbiomedicine. ...
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