科学争议常民专家与挑战知识生产的病患权益运动.docx
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科学争议常民专家与挑战知识生产的病患权益运动.docx
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科学争议常民专家与挑战知识生产的病患权益运动
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。
ConfrontingScientificKnowledge:
TheTransformationofPatients’GroupsinTaiwanin2000s
(ResearchNotes)
“WhatIwanttoargueherethatactivistmovements,throughamassingdifferentformsofcredibility,canincertaincircumstancesbringaboutchangesintheepistemologicalpracticesofsciences–ourwaysofknowingthenaturalworld.”(Epstein2000:
16)
StevenEpsteininhisalreadyclassicworkImpureScience:
AIDS,Activism,andthePoliticsofKnowledge(1996)documentsthetrajectoryofAIDSmovementintheUnitedStatessincelate1980s,andrevealshowactivistshaveconfrontednotonlytheprejudicetowardAIDSpatientsortheinadequacyofresourceallocation,butalsotheproductionofscientificknowledge.Forexample,theactivistschallengedthemethodologyindrugexperimentsasimmoral,andforcedscientiststogeneratesomepioneeringscientificresearchmethods.Epstein(2000)believesthatsuchmovementshaveprofoundimpactonthebiomedicineintheUS,andheobservesthatotherhealth-relatedactivismfollowssimilarstrategies.
WhileEpsteincarefullypresentssuchacaseasoneinmodernWesternsociety,andparticularlytheUS,wherescientificcontroversyincreasesrapidlyinrecentyears,IhaveobservedasimilarmovementtrajectoryinTaiwan.In1998,whenIconductedresearchonthepatients’rightsmovementinTaiwan,theactivists’maingoalswere:
re-allocationofmedicalresourcesunderthecapitalistsociety,re-assessmentofhierarchaldoctor-patientrelationship,andde-stigmatizationofcertaindiseases(Wu2000).SomepatientswanttheirmedicalcaretobecoveredbyNationalHealthInsurance.Somecriticizetheblack-boxingofmedicaldisputesettlements.Somefightagainstdiscrimination.Mostofthemadvocatelegalreformsandvaluechangestoachievetheirgoals.Scientificknowledgewasnotthemaintarget.Mainlyitwastheattitudeandbehaviorofmedicalprofessionals–fromcoveringtheirmistakestoshowingbiastowardsomepatients–thatwerecriticized,nottheirscientificknowledge.However,since1999,Ihaveobservedhowmedicalscientists,epidemiologists,bio-statisticians,andevencomputerengineeringwhodotheirresearchhavealsobecomethetargetofhealth-carerelatedactiongroups.Itseemsthatthesegroupsfindthat,togetbetterqualityhealthcareortogainsocialjustice,theexaminationoftheproductionofscientificknowledgealsoplaysacrucialpart.
Inthispreliminaryreport,Iintendtopresentthisnewfacetofpatients’rightsmovementsinTaiwansince2000.Howdothesegroupscollectandpresentdifferentformsofcredibility?
Ifscientificknowledgeliesinitsesotericformsaswellasthecontroloftheevaluationoftheirwork(Friedson1970),towhatextentcantheselaypeoplechallengeit?
Inwhatcircumstancescansuchchallengeleadtoeffectiveresponses?
Whyhavesuchchallengesstartedincreasingsince2000?
Iusethreecasesfordiscussion.Intheend,Iwillmakecomparisonandcontrasttofigureoutthekeyfactorsforthepathwaystowardbuildingcredibilityamonglayactivists.
I.BeyondtheQualityofCare
TheDepartmentofHealthannouncedinJanuary22,2002,that,thelaparoscopiccoagulationofuterinevesselsshouldbeviewedasahumansubjectexperiment.Theannouncementcameasaresponsetoarequestfromawomen’sgroup.Acontroversialsurgerythusbecamestrictlysupervised,afterfeministsprotest.Itisasurprisinglyquickresponseformthegovernmenttomeetthecriticismofmedicalpracticefromfeministgroups.
Whathappened?
InDecember2001,amiddle-agedwomancametotheTaipeiAssociationforthePromotionofWomen’sRights(TAPWR)forredressingagrievanceagainstDr.Wei-MinLiu,anobstetrician-gynecologistinTaipeiVeteransGeneralHospital.Atthattime,themediawasfullofreportsofDr.Liu’sunusualachievementforwinninginternationalawardonhisnewmethodintreatingwomenwithsymptomaticfibroids.Insteadofdoinghysterectomyandmyomectomy,Dr.Liuclaimsthathedidlaparoscopicbipolarcoagulationofuterinevessels(Liuetal.2001).However,thiswomanclaimedthatthedoctorwrongfullycoagulatedherureters,whichtransporttheurinefromthekidneys,ratherthantheuterinevesselsduringasurgeryin1999,whenDr.LiujuststartedhisexperimentinTaipeiVeteransGeneralHospital.SinceTAPWRhasreceivedsomeotherwomen’srequestsforinformationaboutthisnewsurgicalmethodbeforereceivingthegrievance,TAPWRdecidedtowriteanofficialrequesttotheDepartmentofHealth,askingforclarificationoftheprosandconsofsuchsurgery.Totheirsurprise,theDepartmentofHealthquicklyannouncedthatsuchsurgeryshouldbetreatedas“humansubjectexperiment,”thusneedtobedoneunderspecificsupervision,andshouldbefreeofcharge.“Icannotbelievethatonlythroughoneofficialrequestwegainedthatmuchattention,”saidWan-FenTsai,theSecretaryGeneralofTAPWR.Sheviewssuchquickresponseasanewvictoryofwomen’shealthmovement.
Severalfactorsexplainwhyonegrievanceledtosuchdramaticresponse.Firstofall,thewomanwhocametoseekhelpthroughTAPWRwasnotanaccident.TAPWRhasbeenthemostactivefeministgroupwhofocusesonwomen’shealthissues.TAPWRalsosetupthefirsthotlineforlaypeopletoconsultonwomen’shealthissues.Listeningtowomen’scomplaintsandconfusionhasbeenoneoftheirgrassrootsefforts.Besides,TAPWRhasalsoworkedonsomepolicy-making,suchasthereformsofabortionregulation,thedebatesonsurrogatemotherhood,andsoon.Again,likemostotherhealth-carerelatedgroups,TAPWRusedtostriveforlegalreformsandde-stigmatizationofwomenwithcertainmedicalandhealthconditions(suchasabortion).WhenTAPWRdebateswithdoctorsinsomepublichearing,TAPWRmostlyconfrontstheirpracticesandtheirbehaviortowardwomenseekingmedicalcare.However,in1999,whenTAPWRcriticizedthelagginglegalizationofRU486,oneoftheirtargetswasthewayclinicaltrialswereconducted.ThiswasthefirsttimethatTAPWRattackedthescientificmethodsitself.
NoteveryattackthatTAPWRlaunchesgainsthatmuchattention.WehavetonotethatDr.Liu’ssurgicalmethodhasbeencontroversialinmedicalcircles.Dr.LiustartedhisexperimentinMarch1999.OnMother’sDayofthatyear,Dr.Liuwroteanessayregardingtheimportanceofwomen’swomb,andreportedhisfindingofalready16caseswiththisnewmethod.Thisshowshisunusualpreferenceofmediareportscomparedtothatofmostoftheothermedicaldoctors.Thenormofthesciencecirclesistoreportanewfindingonlyafteritisformallypublishedinacademicjournals.Similarnewspaperreportscontinued.TheglamourofthisnewmethodreacheditshightinOctober2000,whenDr.LiuwonthebestpaperawardintheWorldCongressofGynecologicalEndoscopy.DespitethemediaglamourofLiu’sachievement,themedicalcircleshadsomedisputes.Somedoctorsovertlycastsuspiciononthelong-termeffectsofsuchsurgery.Inaweeklymeetingofanoby-gyndepartmentthatIsatin,somediscussionregardingtheseriousconsequencesofsuchsurgerywerebroughtup.Mostunusually,theTaiwaneseAssociationofGynecologicandObstetricEndoscopist(TAGOE)issuedasurveyof32executivedirectorsandsupervisors,andsomeexperiencedendoscopists,ofwhom90%objectedusingsuchsurgeryasafirstlinetreatment.Althoughsuchsurgeryremainscontroversial,nospecificactionwastakentopreventthisexperiment.WhenDr.LiuwonanotherbestpaperawardfromtheWorldCongressofGynecologicalEndoscopyintheendof2001,theinternationalrecognitionseemedtohavefurtherglorifiedandlegitimizedDr.Liu’spractice.ThenthismedicalcontroversyreachedanendwhentheDepartmentofHealthclassifieditasahumansubjectexperiment,ratherthanawell-recognizedpractice.
Still,onlymedicalcontroversyitselfwouldnotleadtoanendofadispute.ThiscaseechoeswhatEpstein(1995)observes,thatlaypeoplemostlikelygaintheircredibilitywhenthescientificcirclesthemselveshavedisputes.Asnotattackingcolleaguesbecomesthenormamongthemedicalprofession,awomanpatient’sinterestbecomeslegitimatetodisclosethedispute.TheTAPWR,asafairthirdparty,representingwomenmedicalcareseekers,facilitatesits[their?
]credibility.AnofficialrequestfromsuchNGOgivestheDepartmentofHealth,whichiscontrolledbymain-streammedicine,legitimacytosolvethedispute.IcanimaginethatifitisamemberoftheLegislativeYuanwhoholdsamediaconference,thewaymostmedicaldisputesgetsrevealed,thedisputewouldstayonthelevelofmediawarforawhilebeforereachingthegovernmentalmedicalethiccommittee.Itisthetimelyconjunctureofscientificcontroversy,theindividualwoman’sgrievance,andtheNGOprotestthatleadstothequickclosureofthismedicaldispute.
II.CriticizingTechnologythat“Creates”Problems
Inan“ART(assistedreproductivetechnologies)counselinginpractice”conferenceheldbytheTaiwaneseSocietyforReproductiveMedicine(TSRM)inJune,2002,ExecutiveDirectorEstherLaiofthePrematureBabyFoundationofTaiwan(PBFT)co-chairedtheconferencewithDr.Kuo-GuangLi,thepresidentofTSRM,forasection[notclear!
whatkindof“section”?
]called“Minimizingtheriskofmultiplepregnancy.”Inasemina
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- 关 键 词:
- 科学 争议 专家 挑战 知识 生产 病患 权益 运动
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