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1、科學爭議、常民專家,與挑戰知識生產的病患權益運動(研究紀要)吳嘉苓台大社會系副教授,clwu@ccms.ntu.edu.tw中文摘要台灣的病患權益運動過去以資源分配(例如爭取納入健保給付)、認同政治(例如去除特定疾病的污名)為主,近幾年出現以挑戰科學知識生產的運動內容。這種新興病患權益運動的方式與策略,對於理解常民專家如何產生,科技民主化如何進行,以及21世紀一個「科技社會」新結構的特色,提供了重要的分析線索。本文將以早產兒基金會對於人工協助生殖科技植入胚胎過多的介入,台北市女權會對於子宮肌瘤婦科手術的糾舉,以及RCA自救會對於癌症流行病學執行方
2、式的批評等幾個案例,來探討現今病患權益團體與科學社群之間的專家知識政治。本文發現,科學社群內部對於議題的爭議界定,專業之間的分裂,以及社運成員高文化資本的特色,是常民運動者能夠成功達成訴求的關鍵。15ConfrontingScientificKnowledge:TheTransformationofPatients’GroupsinTaiwanin2000s(ResearchNotes)“WhatIwanttoargueherethatactivistmovements,throughamassingdifferentformsofcredibi
3、lity,canincertaincircumstancesbringaboutchangesintheepistemologicalpracticesofsciences–ourwaysofknowingthenaturalworld.”(Epstein2000:16)StevenEpsteininhisalreadyclassicworkImpureScience:AIDS,Activism,andthePoliticsofKnowledge(1996)documentsthetrajectoryofAIDSmovementintheUnit
4、edStatessincelate1980s,andrevealshowactivistshaveconfrontednotonlytheprejudicetowardAIDSpatientsortheinadequacyofresourceallocation,butalsotheproductionofscientificknowledge.Forexample,theactivistschallengedthemethodologyinofdrugexperimentsasimmoral,andforcedscientiststogener
5、atesomepioneeringscientificresearchmethods.Epstein(2000)believesthatsuchmovementshashaveprofoundimpactsonthebiomedicineintheUS,andheobservesthatotherhealth-relatedactivismfollowsthesimilarstrategies.WhileEpsteincarefullypresentssuchacaseasoneinmodernWesternsociety,andparticul
6、arlytheUS,wherescientificcontroversyincreasesrapidlyinrecentyears,IhaveobservedasimilarmovementtrajectoryinTaiwan.In1998,whenIconductedresearchonthepatients’rightsmovementinTaiwan,theactivists’maingoalswere:re-allocationofmedicalresourcesunderthecapitalistsociety,re-assessmen
7、tofhierarchaldoctor-patientrelationship,andde-stigmatizationofcertaindiseases(Wu2000).SomepatientswanttheirmedicalcaretobecoveredbyNationalHealthInsurance.Somecriticizetheblack-boxingofmedicaldisputessettlements.Somefightagainstdiscrimination.Mostofthemadvocatelegalreformsand
8、valuechangestoachievetheirgoals.Scientificknowledgewasnotthemaintarg