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The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the

Reform of Clinical Trials


Author(s): Steven Epstein
Source: Science, Technology, & Human Values, Vol. 20, No. 4, Special Issue: Constructivist
Perspectives on Medical Work: Medical Practices and Science and Technology Studies (Autumn,
1995), pp. 408-437
Published by: Sage Publications, Inc.
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The Constructionof Lay


Expertise:AIDSActivism
andthe Forgingof Credibility
in the Reformof ClinicalTrials
Steven Epstein
University of California,

San Diego

In an unusualinstanceof lay participationin biomedicalresearch,U.S. AIDStreatment


activistshave constitutedthemselvesas credibleparticipantsin theprocess of knowledge
construction,therebybringingabout changes in the epistemicpractices of biomedical
research.This article examinesthe mechanismsor tactics by which these lay activists
have constructedtheircredibilityin theeyes of AIDSresearchersandgovernmentofficials.
It considers the implicationsof such interventionsfor the conductof medical research;
examinessome of the ironies,tensions,and limitationsin the process;and arguesfor the
importanceof studyingsocial movementsthatengage 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
of thejournal.Thanksalso to Olga Amsterdamskaandthe 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
of Pennsylvaniaandthe Universityof California,SanDiego, forusefulcriticismandsuggestions.
Science, Technology,& HumanValues,Vol. 20 No. 4, Autumn1995 408-437
? 1995 Sage PublicationsInc.
408

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Epstein/ AIDS Activism

409

physicians, and federalhealth authorities-but variouscredentialedexperts


plus the mass media and the pharmaceuticaland biotechnologycompanies;
it also encompassesa strongand internallydifferentiatedactivist movement
along with various organs of alternativemedia, including activist publications and the gay press. Beliefs about the safety and efficacy of particular
therapeuticregimens, and understandingsabout which clinical research
practicesgenerateusefulresults,arethe productof an elaborate,often heated,
and, in some ways, quite peculiar complex of interactionsamong these
variousplayers (Epstein 1993).
My point in stressingthe breadthof participationin claims makingis not
simply to say thatAIDS researchis heavily politicized or thatit has a public
face. More profoundly, this case demonstratesthat activist movements,
throughamassingdifferentforms of credibility,can in certaincircumstances
become genuine participantsin the constructionof scientific knowledgethat they can (within definite limits) effect changes both in the epistemic
practicesof biomedicalresearchandin the therapeutictechniquesof medical
care. This surprisingresultis, of course, at variancewith the popularnotion
of science as a relativelyautonomousarenawith high barriersto entry.1It is
a result that illustratesthe dangerof understandingthe role of laypeople in
scientific controversiessolely in passive terms-as a resourceavailablefor
use, or an ally availablefor enrollment,by an entrepreneurialscientist who
is conceived of as the truemotive force in the processof knowledgemaking.
Infact, activistmovementscan, at times, advancetheirown strategicgoals
within science, helping to constructnew social relationshipsand identities,
new institutions,and new facts and beliefs in the process (cf. Brown 1992;
Cozzens and Woodhouse 1995; Cramer,Eyerman,and Jamison 1987; Di
Chiro 1992; Petersen 1984; Rycroft 1991). Medicine, to be sure, is an arena
morepermeableto outsideinfluencethanotherless public, less applied,and
less politicized domains of technoscience (Cozzens and Woodhouse 1995,
538). But even here, AIDS activists did not achieve influence simply by
applyingpolitical muscle of the conventionalsort (althoughthat did prove
necessaryatpointsalong the way). In addition,theyfoundways of presenting
themselvesas crediblewithinthe arenaof credentialedexpertise.At the same
time, these activists succeededin changingthe rules of the game, transforming the very definitionof whatcountsas credibilityin scientificresearchsuch
thattheirparticularassets would prove efficacious.2
Successful lay incursions into biomedicine have considerableimplications for the understanding
of such broadphenomenaas the culturalauthority
of science and medicine(Barnes 1985; Nelkin 1987; Starr1982), the public
receptionof scientificclaims (Collins 1987; Jasanoff1991;Wynne 1992), the
boundariesbetween"science"and "society"(Gieryn1983), the relationships

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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 understandimplicitly what some sociologists (Berg and Casper,this issue) have recentlybeen
assertingprogrammatically-that medical therapeuticscannot fully be understood separatelyfrom questions of knowledge constructionand that our
conception of scientific practicecan be furtheredby carefulattentionto the
local details of medicalwork.The importanceof 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,environmentalillness, or chronicfatigue.
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 socalled "treatmentactivists"into the design, conduct,andinterpretationof the
clinical trials used to test the safety and efficacy of AIDS drugs.3This is an
areain which activistshaveenjoyedgreatsuccess in transformingthemselves
into credible players-as marked,for example, by the presence in recent
years of AIDS treatmentactivists as full voting membersof the committees
of the NationalInstitutesof Health (NIH) thatoversee AIDS drug developattheFoodandDrugAdministration
mentandasrepresentatives
(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
U.S. institutions),"not since randomizedclinical trials became the orthodox
mode of clinicalinvestigationhavethe mostbasicapproachesandassumptions
regardingresearchmethodologiesbeenopento searchingcritiquein thecontext
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
describethe uniquecharacteristicsof the AIDS treatmentactivistmovement
and analyzefourkey mechanismsor tacticsthattheseactivistshavepursuedin
constructingtheir credibilitywithin biomedicine:the acquisitionof cultural
theyokingtogetherof
competence,theestablishmentof politicalrepresentation,
epistemologicalandethicalclaimsmaking,andthetakingof sidesin pre-existing
methodologicaldisputes.Finally,I pointto some of the implications,complications,andironiesof the activistengagementwithbiomedicine.

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Epstein/ AIDS Activism

411

Medical Science, Social Movements,


and the Study of Credibility
Scientific credibilityrefershere to the capacityof claims makersto enroll
supportersbehindtheirclaims, to legitimatetheirargumentsas authoritative
knowledge, and to present themselves as the sort of people who can give
voice to science.6 Credibility, therefore, can be considered a system of
authority in Weberian terms, combining aspects of power, dependence,
legitimation,trust,and persuasion(Weber1978, 212-54). In his analysis of
the medical profession, Paul Starr(1982, 13; cf. Cicourel 1986, 88-89) has
observedthat authorityof this kind includes notjust social authorityrooted
in the division of laboror in organizationalhierarchies-the probabilitythat
a commandwill be obeyed, in Weber'sterms-but also cultural authority,
which rests on an actor'scapacityto offer what is takento be truth.
As Shapin (1994) has emphasized, credibility is the backbone of the
cognitive and moralorderin modernscientific inquiry,andtrustingrelationships are a sine qua non of scientific practice(see also Barnes 1985; Barnes
and Edge 1982; Latourand Woolgar 1986; Shapinand Schaffer 1985; Star
1989,138-44; WilliamsandLaw 1980). Questionsof credibilitymay emerge
as particularlysalient in fields, such as AIDS research,that are markedby
extremedegrees of controversy,uncertainty,and, in particular,politicization
(cf. Martin1991, chap. 4). When variousinterestedpublics pay attentionto
the progressof researchandexpect answers,a "credibilitygap"may develop
if solutions are not forthcoming.Indeed, despite the suspicion of expertise
that has become rampantin many quarters,people in advancedindustrial
societies do typically expect doctorsand scientists to protectthem from the
effects of epidemic disease. The failureof the expertsto solve the problem
of AIDS quickly, as they were "supposedto" do, has heightenedpopular
resentmentand diminishedthe credibilityof the establishment;it has also
openedup more space for dissidentvoices.
Credibilitycan reston a rangeof social markerssuch as academicdegrees,
trackrecords, institutionalaffiliations,and so on. The sheer complexity of
AIDS froma scientificstandpointandthe profoundanddifferentiatedimpact
of the epidemic have ensuredthe participationof scientists from a range of
disciplines, all of them bringingtheirparticular,often competing,claims to
credibility.But the strikingfact aboutAIDS is that the politicizationof the
epidemic has broughtabout a furthermultiplicationof the successful pathways to the establishmentof credibility,a diversificationof the personnel
beyond the highly credentialed,and hence more convoluted routes to the
constructionof facts and the establishmentof closure in biomedicalcontro-

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Science, Technology,& HumanValues

versies. The science of AIDS thereforecannotsimply be analyzed"fromthe


top down"; it demands attentionto what Foucault has called the "microphysics of power" in contemporaryWestern societies-the dispersal of
fluxes of power throughoutall the cracksand crevices of the social system;
the omnipresenceof resistanceas imminentto the exercise of power at each
local site; andthe propagationof knowledges,practices,subjects,and meanings out of the local deploymentof power (Foucault1979, 1983).7

The Rise of the AIDS Movement


A numberof studies of scientific controversiesin the public arena(e.g.,
Mazur1973; Nelkin 1982) have focused in useful ways on the clash between
scientistsor othercredentialedexpertsandsocial movements.Yetfew studies
have exploredthe role of movementsin the constructionof credibleknowledge, and few sociologists of scientific knowledge have engaged with the
sociological literatureon social movements.8Petersen and Markle (1981,
153) have applied the "resourcemobilization"perspective (McCarthyand
Zald 1977) to the study of the cancer treatmentmovement, analyzing the
structuralconditionsthat allow such movementsto "tryto form coalitions,
seek sponsorship,andappealto a wideraudience... as a meansof increasing
their movement resources."And Indyk and Rier (1993) have likewise emphasizedresourcemobilizationin theiruseful analysis of the particularcase
of alternativeknowledge productionin the AIDS epidemic. But there has
been little attentionby analysts of science to the growing theoretical and
empiricalliteratureon "new social movements"(e.g., Cohen 1985; Gamson
1992;Habermas1981;KlandermansandTarrow1988;Larana,Johnston,and
Gusfield 1994;Melucci 1989;MorrisandMueller 1992;TaylorandWhittier
1992; Touraine1985). These works describingthe ecology movement, the
women's movement, the antinuclearmovement, racial and ethnic movements, the lesbian and gay movement,and so on have an obvious relevance
to the study of the AIDS movement.9
Theorists and analysts of new social movements differ greatly in their
approachesto the topic, butmost tend to agreethatthe actorswithinthe new
movementsare drawnprimarilyfromthe "newmiddle class" or "newclass"
of cultureproducers.But as againstthe traditionsof working-classpolitics,
the class characterof the new movementsis not emphasizedby the activists.
They are involved not (or at least, not only) in a distributivestruggle,where
an overall quantityof resourcesis being parceledout to competing groups,
but in a struggle over culturalforms-what Habermas(1981, 33) calls the
"grammarof forms of life." Their emphases tend to be on "personaland

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Epstein/ AIDSActivism 413

intimateaspects of humanlife," their organizationstend to be "segmented,


diffuse, and decentralized,"and their theatricalprotest tactics emphasize
civil disobedience and a politics of representation(Johnston,Larana,and
Gusfield 1994, 6-9).
Centralto the self-understandingof such movements is a focus on the
values of autonomyandidentity.Yet as Cohen(1985, 694) argues,the salient
featureof the new social movementsis not so much that they assertidentities-something all movementsdo-but that the participantshave become
reflexively awareof theirown active involvementin contestedprocesses of
identity construction.Although the constitutionof identitymay sometimes
become an end in itself, Gamson (1992, 60) argues that it also serves an
instrumentalfunction in the mobilization process, influencing not only
people's willingness to "investemotionally"in the fate of the movementand
"take personal risks on its behalf"but also their choices of strategiesand
organizationalforms.
This emphasis on identitypolitics has, in certaincrucialrespects, facilitated the capacity of AIDS activists to engage with scientific knowledge
production.As Wynne(1992, 301) has noted,"theunacknowledgedreflexive
capability of laypeople in articulatingresponses to scientific expertise"is
cruciallydependenton theirconstructionand renegotiationof a social identity. Furthermore,becauseidentitypolitics arepreoccupiedwith nonmaterial
issues-with questionsof representationand meaning-its practitionersare
And precisely
inclined to wage struggles over the definition of reality.m?
becauseidentitypolitics standin oppositionto whatFoucault(1983, 211-12)
has called "normalization,"such movements are highly sensitive to the
imposition of norms, categories, and interpretationsby outside authorities.
UnderstandingAIDS activism as a new social movementhelps explain why
these activists might have a greaterinclinationand capacityto participatein
the constructionof social meanings,includingforms of knowledge.
The AIDS movementis broadbasedanddiverse,rangingfromgrassroots
activistsand advocacyorganizationsto healtheducators,journalists,writers,
service providers,people with AIDS or HIV infection,andothermembersof
the affected communities.The membersof this movement are not the first
group of laypeople to put forwardclaims to speak credibly on biomedical
matters(see Dutton 1984; Shapiro1985;von Gizycki 1987). Canceractivists
in the 1970s, for example,providean interestingcounterpointin an analogous
situation(PetersenandMarkle1981), while the feministhealthmovementis
perhapsthe clearestcase in point (Fee 1982). Patientself-help groups, now
a common andrapidlyproliferatingphenomenon(Stewart1990), also sometimes engage in the evaluationof scientific knowledgeclaims. But the AIDS
movement is indeed the first social movement in the United States to

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accomplishthe mass conversionof disease "victims"11into activist-experts,


and in thatsense the AIDS movementstandsalone, even as it begins to serve
as a model for others.Its distinctiveapproachtowardscientific and medical
questions owes to a specific constellationof historicaland social factors.
To some extent, the uniquefeaturesof the clinical pictureof AIDS have
shapedthe developmentof an activistresponse.AIDS andHIVhave affected
many young people in theirtwenties andthirties-a groupfor which thereis
little social expectationthat they will passively await death. Indeed, those
who test positive on HIV antibodytests (availablesince 1985) are likely to
be told by medicalauthoritiesto expect some numberof years of outwardly
normalhealthbeforethe onset of symptoms.Duringthis period,activism not
only is feasible from a physical standpoint,but seems eminently practical
from a political and psychological standpoint.
Even more fundamentally,the distinctive social epidemiology of AIDS
has shaped the characterof the public engagementwith science. From the
start and up to the present day, AIDS has been understood, both in
epidemiologicaland lay parlance,as a disease of certainalready-constituted
social groups distinguishedby their lifestyle, their social location, or both.
As a result, the very meaning of AIDS is bound up with the cultural
understandingsof what such groups are like, while the very identityof the
groups is shaped by the perceptionof them as "the sort of people who get
this illness." If AIDS were not deadly, if it were not associated with taboo
topics such as sex and druguse, and if the groupsaffectedwere not already
stigmatizedon othercounts,suchlinkagesbetweenidentityandillness might
be of little consequence.As it is, the AIDS epidemichas engenderedfearand
prejudiceand has sparkedthe necessity,on a mass scale, for what Goffman
(1963) once called "themanagementof spoiled identity."
Gay men, the groupwhose identityhas been shapedmost thoroughlyby
the confrontationand associationwith the epidemic,enteredthe eraof AIDS
equippedwith a whole set of crucialresourcesto engage in the struggleover
social meanings.In the recentpast,gays andlesbiansin the UnitedStateshad
achieved a singularredefinitionin social status, challenging the dominant
frames of homosexualityas illness or immoralityand reconstitutingthemselves as a legitimate"interestgroup"pursuingcivil rightsandcivil liberties.
With the limited successes of the "homophile"movementof the 1950s and
1960s andthe moresubstantialimpactof the gay liberationmovementof the
1970s, gay men andlesbiansrecastedsocial norms,constructedorganizations
and institutions, and established substantialand internally differentiated
subculturesin urban centers throughoutthe United States (Adam 1987;
Altman 1982; D'Emilio 1983).

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Epstein/ AIDS Activism

415

By thetime theAIDS epidemicwas recognizedin 1981,the gay movement


was thoroughlyengaged in projectsof identity politics that linked tangible
politicalgoals to the elaborationandassertionof anaffirmativegroupidentity
(Escoffier 1985). A threatto identity,therefore,was a threatthat the movementcould easily understand-andone againstwhichit was quickto mobilize.
Negotiationwith the medicalprofessionwas not entirelyforeignto this movementbecausea specific componentof the gay liberationagendahad been the
of gay identity(Bayer1981).Indeed,gay activistshadlong
"demedicalization"
been inclinedto view medicalauthoritieswith some suspicion.Furthermore,
manylesbians(andheterosexualwomen)who wouldbecomeactivein theAIDS
movementwere schooledin the tenetsof the feministhealthmovementof the
1970s,whichalsoadvocatedskepticismtowardmedicalclaimsandinsistedon the
patient'sdecision-making
autonomy(Corea1992).
The AIDS movement,in otherwords, was built on the foundationof the
gay and lesbian movement and borrowedfrom its particularstrengthsand
inclinations.It matteredthatgay communitieshadpre-existingorganizations
thatcould mobilize to meet a new threat,and it matteredthatthese communities contained (and in fact were dominatedby) white, middle-class men
with a degree of political clout and fund-raisingcapacity unusual for an
oppressedgroup. It was cruciallyimportant,as well, that gay communities
possessed relatively high degrees of "culturalcapital"-cultivated dispositions for appropriatingknowledge and culture(Bourdieu1990). These communitiescontainmanypeople who arethemselvesdoctors,scientists,educators,nurses,professionals,or intellectualsof othervarieties.Onthe one hand,
thisculturalcapitalhas providedtheAIDS movementwithanunusualcapacity
to contestthe mainstreamexpertson theirown ground.On the otherhand,it
facilitatesmediationandcommunicationbetween"experts"and"thepublic."

AIDS Treatment Activism


The U.S. AIDS movement encompasses a wide range of grassroots
activists, lobbying groups,service providers,and community-basedorganizations;representsthe diverseinterestsof people of variousraces,ethnicities,
genders,sexual preferences,andHIV "riskbehaviors";andhas engagedin a
variety of projects directed at numeroussocial institutions(Altman 1994;
Corea 1992; Elbaz 1992; Emke 1993; Gamson 1989; Patton 1990; Quimby
and Friedman 1989; Treichler 1991). Treatmentactivism, more narrowly
defined, is the province of particularmovement organizations.It includes
specific subcommittees of ACT UP-the AIDS Coalition to Unleash
Power-including the Treatment& Data Committeeof ACT UP/New York

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(along with a more recentspin-off organizationcalled the TreatmentAction


Group)andthe TreatmentIssues Committeeof ACT UP/GoldenGatein San
Francisco.Anotherkey playeris the San Francisco-based
organizationProject
Inform,which lobbies for the developmentof effectiveAIDS treatmentsand
worksto educatelaypeople,particularlyin gay communities,abouttreatments.
In addition,a numberof independentpublications,includingthe SanFranciscobasedAIDSTreatmentNews and the New York-basedTreatmentIssues (published by Gay Men's HealthCrisis),have played a crucialrole in evaluating
clinicalresearchandprovidinginformationaboutclinicaltrialsthatis considered
widely credibleandoftenreliedon by doctorsas well as patients.
AIDS treatmentactivism dates to the mid-1980s, when activists began
clamoringfor the rapidapprovalof experimentaltreatmentsand established
so-called "buyersclubs,"organizationsoccupyinga grayzone of legality that
importedand distributedunproventreatmentsto patientsaroundthe United
States (Arno andFeiden 1992). Activist ire was directedlargelyat the FDA,
whose "paternalistic"policies of drug regulation were perceived to rob
patientsof the right to assume the risk of an experimentaltreatment.By the
late 1980s, however,activistattentionhadshiftedto earlierstages in the drug
developmentpipeline, in partbecause of growing concernsaboutthe ethics
of clinical researchand in part because activists recognized that it was no
good fighting for fasterapprovalof drugsif therewere few such drugsto be
approved.This realizationimplied a shift in targetsfromthe FDA to the NIH
and,specifically,to the AIDS ClinicalTrialsGroupof the NationalInstituteof
entityresponsiblefor adminAllergyandInfectiousDiseases,the bureaucratic
isteringthe networkof publiclyfundedclinicaltrialsof AIDS treatments.
As early as 1986, John James, a formercomputerprogrammerand the
editor of AIDS TreatmentNews, had soundeda call to arms:
With independentinformationand analysis, we can bringspecific pressureto
bear to get experimentaltreatmentshandledproperly.So far, there has been
littlepressurebecausewe havereliedon expertsto interpretforus whatis going
on. They tell us what will not rock the boat. The companies who want their
profits,the bureaucratswho wanttheirturf,andthe doctorswho wantto avoid
making waves have all been at the table. The persons with AIDS who want
their lives must be there,too. (James 1986; emphasisadded)

To "rely solely on official institutionsfor our information,"James (1986)


advised bluntly,"is a form of groupsuicide."
Yet how could laypeople bring such pressure to bear? Large, graphic,
well-executed and well-publicizeddemonstrations--includingone at FDA
headquartersin 1988 (Bull 1988) and anotherat NIH headquartersin 1990
(Hilts 1990), both involving more than 1,000 protesters--helpedensurethat
representativesof these agencies would pay attentionwhen activists spoke.

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Epstein/ AIDS Activism

417

Yet,while demonstrationsandstreettheaterremainedthe signaturetacticsof


groups such as ACT UP and attractedthe attention of the media, such
techniquesdid not lend themselves to nuancedcritiqueof specific research
practicesor priorities.Althoughsome activistsopposed "sittingat the table"
with representativesof the scientific and governmentalelite (Wolfe 1994),
most treatmentactivists favoreda strategyof directnegotiation:
I mean,I wouldn'texaggeratehow politewe were.... I wouldjust say thatit was
clearfromthe verybeginning,as MaggieThatchersaidwhenshe metGorbachev,
"Wecan do business."We wantedto makesome moralpoints,butwe didn'twant
to wallowin beingvictims,orpowerless,oroppressed,oralwaysright.Wewanted
to engageandfind out if therewas commonground.(Hamngton1994)12

But to engage fully with the project of biomedical research, treatment


activists needed to undergoa metamorphosis,to become a new species of
expertthatcould speakcrediblyin the languageof the researchers.This was
the agendathattreatmentactivistspursuedover the next several years.

Credibility Tactics
As Shapin(1990, 993) has noted in an analysis of the historicalconstitution of the expert/laydivide, the questionof who possesses culturalcompetence is "oneof the most obvious meansby which we, andpeople in the past,
discriminatebetween 'science' and 'the public.'" The most crucial avenue
pursuedby treatmentactivistsin the constructionof theirscientificcredibility
has been precisely the acquisition of such competence by learning the
language and culture of medical science. Througha wide variety of methods-including attendingscientificconferences,scrutinizingresearchprotocols, andlearningfrom sympatheticprofessionalsboth inside andoutsidethe
movement-the core treatmentactivists have gained a working knowledge
of the medical vocabulary.While activists have also insisted on the need to
bring "nonscientific"language and judgments into their encounters with
researchers,they have nonetheless assumed that the capacity to speak the
languageof the journal article and the conferencehall is a sine qua non of
theireffective participation.13
In a learning approach that one such activist characterizes frankly as "ass

backwards,"activistsoften begin with the examinationof a specific research


protocolin which patientshave been askedto participateand, fromthere,go
on to educate themselves aboutthe mechanismof drug action, the relevant
"basicscience"knowledge base (such as considerationsof the viral replication cycle of HIV or the immunopathogenesisof AIDS), and the inner

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Science, Technology,& HumanValues

workings of "thesystem"of drug testing and regulationincludingthe roles


of the pharmaceuticalcompanies and the relevant government advisory
committees (Braverman1993). Although activists have benefited from the
presence of a few medical and scientific professionalswithin their ranks,
typically the leading lights of the treatmentactivist movement have been
autodidactswho beganas science novices butcame frompositionsof relative
social advantage. Like most of their scientific interlocutors,they have
tended-by and large, although by no means exclusively--to be white,
middle-class,well-educatedmen. And in the courseof learningtrulyimpressive amountsof technicalinformationaboutvirology,immunology,molecular biology, and biostatistics,they have also been able to parlaytheir other
social and personaladvantagesinto new types of credibility.
Mark Harrington,one of the young de facto leaders of ACT UP/New
York'sTreatment& DataCommittee(now withtheTreatmentActionGroup),
exemplifies the pathways to expertise among the treatmentactivist elite.
Harringtonhad studiedGermanart and film at HarvardUniversity and had
workedas a coffee-house waiterand a freelancewriter.When he discovered
ACT UP, Harringtonwas writing scripts for a film company. "The only
science backgroundthatmighthaveprovedrelevantwas when I was growing
up my dad always had subscribedto ScientificAmerican,and I had read it,
so I didn't feel that sense of intimidationfrom science that I think a lot of
people feel in this country,"Harrington(1994) recalled.Takingquick stock
of his ignoranceaboutscience andthe federalbureaucracy,Harringtonstayed
up one night and made a list of all the words he needed to understand.That
list evolved into a fifty-page glossary that was distributedto ACT UP
members(Handelman1990).
Otheractivists explicitly use the metaphorsof a foreign language and a
foreign culture to describe their initiation into treatmentactivism. Brenda
Lein, a San Franciscoactivist,describedthe firsttime she went to a meeting
of the TreatmentIssues committeeof ACT UP:
And so I walked in the door and it was completely overwhelming,I mean
acronymsflying, I didn't know what they were talking about, I thought,oh,
they're speaking Greek and I'm never gonna understandthis language ....
Hank [Wilson] came in and he handed me a stack about a foot high [about
granulocytemacrophagecolony stimulatingfactor]andsaid,"Here,readthis."
AndI looked at it andI broughtit home andI keptgoing throughit in my room
and... I have to say, I didn't understanda word. (Lein 1993)

But afterreadingit aboutten times, Lein concluded:


Oh,this is like a sub-culturething,you know,it's eithersurfingor it's medicine,
andyou just have to understandthe lingo, but it's not thatcomplicatedif you

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thelanguage,it all becamefar


sit throughit. So onceI startedunderstanding
less intimidating.
And indeed,the remarkablefact is thatonce they acquireda certainbasic
familiaritywith the language of biomedicine,activistsfound they could also
get in the doors of the institutions of biomedicine. Once they could converse

comfortablyaboutviral assays and reversetranscriptionand cytokine regulationandepitopemapping,activistsincreasinglydiscoveredthatresearchers


felt compelled, by their own norms of discourse and behavior,to consider
activist argumentson their merits.Not that activists are always welcome at
the table. To quote Lein (1993) again, "I mean, I walk in with, you know,
seven earringsin one earanda mohawkandmy rattyoldjacketon, andpeople
arelike, oh great,one of these streetactivistswho don't know anything."But
once she opens her mouth and demonstratesthat she knows her stuff, she
finds thatresearchersare often inclined, however reluctantly,to addressher
concernswith some seriousness.
AnthonyFauci,directorof the NationalInstituteof Allergy andInfectious
Diseases, makesclearthat"therearesome [activists]who have no idea what
the hell they'retalkingabout,"buthe is nonethelesshappyto grantthat"there
are some that are brilliant,and even more so than some of the scientists"
(Fauci 1994). Prominentacademicresearchersalso typically acknowledge
the acquisitionof scientific competenceon the partof key activists. "Mark
Harringtonis a perfectexample,"recalledDouglas Richman,a virologistand
memberof the AIDS Clinical TrialsGroupat the University of California,
San Diego. "In the first meeting, he got up and gave a lecture on CMV
[cytomegalovirus]to us thatI would have punisheda medical studentfor in
terms of its accuracy and everything else, and he's now become a very
sophisticatedimportantcontributorto the whole process"(Richman 1994).
A second way in which AIDS treatmentactivists have strivento present
themselves as credible is throughthe establishmentof themselves as representatives. That is, a basic "credibility achievement" of treatment activists

has been their capacity to present themselves as the legitimate, organized


voice of people with AIDS or HIV infection(or,morespecifically,the current
or potentialclinical trialsubjectpopulation).This point is easily missed but
is importantbecause the threegroups-activists, people with AIDS or HIV,
and clinical trial participants-overlap but are not isomorphic, and it is a
complicatedquestionwhetherin fact activistsdo meaningfullyrepresentthe
diverse groupsin the United States thatare affectedby HIV.
Overtime, treatmentactivismhas become moredemographicallydiverse,
in partthroughthe mechanismof the CommunityConstituencyGroup(the
formalorganizationof activistselected to sit on the committeesof the AIDS

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Clinical TrialsGroup),the membershipof which is mandatedby the NIH to


represent all the communities affected by HIV. Nevertheless, gay men
continue to play the dominant role. Even within gay communities, the
canbe complex,in partbecausetheactivistsareoften
questionof representation
morepoliticallyradicalthanthegay mainstreamon whosebehalftheyspeakand
in partbecausegayresearchers
andhealthprofessionalsmayalsomakeplausible
claimsto representation.
'Whatrightdo thesepeoplehaveto thinkthatthey are
representingthe gay communitywhenI'm also hereandjust on the otherside
of the fence'?"a prominentgay researchercomplained(Abrams1993).
Looking back at her experiencewith treatmentactivism,one activist who
is now completingmedicalschool reflected,"Ineverrepresentedpeople with
AIDS. I representedactivists.And those aredifferentpeople,you know.They
are a subset of people with AIDS" (Roland 1993). Yet the extraordinary
success of treatmentactivists(who have always been a relativelysmall group
and whose rankshave been furtherdepleted by burnout,illness, and death
over the years) stemmed in large part from their capacity to convince the
biomedical establishmentnot only that they spoke for the larger body of
patients, but also that they could mobilize hundredsor thousandsof angry
demonstratorsto give muscle to their specific requests.And once activists
monopolized the capacityto say "whatpatientswanted,"researcherscould
be forcedto deal with themto ensurethatresearchsubjectswould bothenroll
in theirtrialsin sufficientnumbersand comply with the studyprotocols.On
the basis of their credibility, activists thus constructedthemselves as an
"obligatorypassage point"(Latour1987) standingbetween the researchers
and the trials they sought to conduct (cf. Crowley 1991). Of course, by the
same token, the activists wanted to see the trials conducted;so the point,
really,is thatthe relationshipbecame a powerfullysymbiotic one.
A third credibility tactic employed by treatmentactivists consisted of
yoking togethermethodological(or epistemological)argumentsand moral
(or political) argumentsso as to monopolizedifferentforms of credibilityin
differentdomains. A good example was the activist insistence that clinical
trial populationsshould be more fully representativeof the differentsocial
groupsaffectedby the epidemic (Eigo et al. 1988, 29-31). In AIDS trials,as
elsewhere, the subject populations early on tended to consist largely of
middle-classwhite men. AIDS activistsarguedthatpeople from all affected
populations-injection drugusers and people with hemophilia,women and
men, whites andminorities,heterosexualsandhomosexuals-must be given
access to trials.
One impetus here was the notion (which was itself somewhat new and
controversial)that access to experimentaltreatmentswas a social good that
must be distributedequitably.Most debatesaboutthe ethics of clinical trials

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in the United States in the last quartercentury have focused on issues of


informedconsent and the right of the human subject to be protectedfrom
undue risk. AIDS activism has shifted the discourse to emphasizethe right
of the human subject to assume the risks inherentin testing therapies of
unknown benefit (Edgar and Rothman 1990) and, indeed, to become a
full-fledged partner in the experimentalprocess (Feenberg 1992). Once
participationin clinical trials came to be viewed, in this sense, as a benefit
ratherthan a burden,the question of equal access to trials assumedcentrality.T4At the same time, activistspressedthe claim, backedby some biostatisticians, that to generate data about drug safety and efficacy that is fully
generalizable,one's subject populationmust be broadly representativeof
those who will be receiving the drug (Cotton 1990). Activists therefore
pushedsimultaneouslyfor a morallycrediblepolicy promotingfairaccess to
experimentaldrugs and for a scientifically credible policy for acquiring
generalizabledata. Between these two lines of approach,AIDS treatment
activistshadplenty of roomto play;such trialsnot only would be fairer,they
would also be betterscience. Defendersof the opposing notion that a clean
trialrequireda homogeneousresearchpopulation,by contrast,found themselves increasinglyon the defensive.
A final credibilitytechniqueis the takingof sides in pre-existingdebates
over how clinical researchshould be done. That is, many of the positions
takenby treatmentactivists are not argumentsthatthey dreamedup; rather,
activistshave seized on pre-existinglines of cleavage within the biomedical
I illustratethis point with a brief analysis of how activists
mainstream.15
promoteda "pragmatic"approachto clinical trialsin reactionto researchers'
insistenceon the need to perform"fastidious"trialsto generateclean data.
For most clinical researchers,the best way to obtain clean results about
drugefficacy was to performrandomized,controlled,clinicaltrialsaccording
to carefullydelineatedmethodologicalprecepts.Activists supportedthegoals
of this researchbut also recognizedthatone primarymotivationof the actual
researchsubjectswas access to otherwiseunobtainableandpotentiallyhelpful therapies.The perceptionof activists was that,in the name of clean data,
people with lab test values or demographiccharacteristicsoutside of a
specifiedrange,or those who were currentlytakingothermedicationsor had
takenthem in the past, were finding themselves excluded from study protocols. Similarly,those enrolledin studieswho took othermedicationswithout
explicitpermissionwere sometimesthreatenedwith expulsion.The practical
effect, activists argued,was that in some cases trials were unable to recruit
subjectsbecause the treatmentoptions that were offered were too unattractive. In othercases, people were lying in orderto get into trialsof potentially
helpful therapiesor were cheating on the protocols while trials were under

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way. Thatis, in the contextof a life-threateningillness amonga savvy group


of patients, the very emphasis on clean data was itself helping to produce
some decidedly messy clinical trials.
TerrySuttonwas an activistwho wantedto be a researchsubjectin a trial
of a drugthathe believed might keep him from going blindfrom cytomegalovirus retinitis (a common opportunisticinfection in people with AIDS).
Suttonwas consideredineligible for participationbecausehe had previously
takenanotherdrugfor the same conditionandthe researchprotocolexcluded
such patients out of concern with statisticalbias. Sutton was quoted in the
gay press in 1989, shortlybefore his death:
The idea of clean data terrifiesme, because it punishes people for trying to
treatearly.My roommate... has made the decision not to treatearly because
of the pure subjectrule. What he says is "I want to be a puresubjectso thatI
can get access to the best protocolonce it startsto move." You only get to be
a pure subjectonce. (Kingston 1989, 4)

In the activistway of lookingatthe world,at leastcirca 1989, theparticular


ways in which trialsweredesigned,withtheiremphasison specific strategies
of ensuring methodological purity and cleanliness, reflected a dangerous
abstractednessfrom pressing social realities. In developing this critique,
activists seized on a pre-existing debate between two competing understandings of the very purpose of clinical trials-a debate with a history
independent of AIDS or AIDS activism. This history goes back to the
beginningof formalclinical researchearly in the century(Marks1987), but
one might reasonablybegin with a 1983 article in the Annals of Internal
Medicine by Alvan Feinstein, a professor at the Yale University School of
Medicine and an authorityon clinical trials.
Feinstein(1983) haddistinguishedbetweentwo warringconceptionsof such
and'fastidious"perspectives.Proponents
trials,whichhe calledthe"pragmatic"
of the firstperspectivelook to trialsto answerpragmaticquestionsin clinical
the heterogemanagement.The trialdesign,in theirview, should"incorporate
neity,occasionalor frequentambiguity,and other 'messy' aspectsof ordinary
clinicalpractice"(Feinstein1983,545). Thosewho approachclinicaltrialswith
the perspectivethatFeinsteincalls fastidious"fearthat[thepragmatic]strategy
will yield a 'messy'answer.They prefera 'clean'arrangement,
using homogeneousgroups,reducingor eliminatingambiguity,andavoidingthe spectreof
biased results"(p. 545).
Feinstein'sdistinctionbetweenfastidiousandpragmaticclinicaltrialswas
describedby RobertLevine (1986), a professorof medicine and ethicist at
YaleUniversity,in a 1986 book;fromthere,it madeits way into the working

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vocabularyof John James (1988), the editor of AIDS TreatmentNews, who


discussed it in the pages of thatpublication.The pragmaticperspectivemade
sense to the activists, as it did to the communityphysicians with whom they
were often allied. In theirview, clinical trialsareexperiments,to be sure;but
they are not the kind of laboratoryexperimentswhere the variablescan be
controlledneatly,and it is self-deceptiveto pretendotherwise.They should
be designed not to answer ivory tower theoreticalquestions, but to inform
day-to-dayclinical practiceand help patientsand doctors make meaningful
decisions when confrontedwith treatmentdilemmas.Indeed,the trials with
the most elegant designs may not be the ones that provide the most useful
informationif they fail to reflectthe actualtreatmentregimensprescribedby
doctorsand consumedby patients.
Treatmentactivists then pushed the critique of fastidious trials even
furtherto raise questionssuggestedby TerrySutton'scomment.Did "clean"
data come only from "pure"subjects? Was "messy," "impure"science
necessarilyworse science?As one prominenttreatmentactivisttold a Senate
healthsubcommittee,people with AIDS are not in awe of that "strangeand
abstractgod, clean data" (Marshall 1989, 345). Similarly, James (1989)
arguedthat "good science, like God, patriotism,and the flag, are rhetorical
devices designed to be impossible to argue against-devices often used in
the absence of a good case on the merits."16Academicresearcherscould be
counted on to come up with "elegant"researchdesigns, but were these the
ones that would answer the burningquestions most effectively? The metaphorsof cleanliness,elegance, and so on variedfromthe realmof hygiene to
thatof social status,butthe implicationin each case was similar:the defense
of science put forwardby mainstreamresearcherswas an ideology designed
to promotethe kindof science theyhappenedto do as the only kindthatcould
be called science.
Building on concepts such as Feinstein's notion of pragmatic trials,
activists hinted at (although never fully described) what they saw as a
preferablekind of science, which would be more accurate,more useful, and
more responsible.This science would be less preoccupiedwith the formal
rules that prevent"contamination"and more open to the varying of experimentaldesign in recognitionof practicalbarriers,ethicaldemands,andother
"real-world"exigencies. "Thetruthis that [clinicaltrial]researchis muddy,
andpeople need to startacknowledgingthat,"one activist explained:
Youcan't get good clean answers;the world does not work thatway. Patients
tendto not work thatway unless you totally manipulatethem. And this is not
a populationthatis going to be easily manipulated.So you eitherhave muddy
researchthatyou knowis muddy,and you can at least say, 'This is where it's

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muddy,"or you have muddyresearchandyou don't even know how muddyit


is. (Roland 1993)

One way of understandingthis critiqueis to recognizethata chief goal of


the treatmentactivist movement has been to find methodologicalcommon
ground that will satisfy competing ethical concerns. On the one hand,
activists have often criticized clinical trials from the vantage point of the
rightsof researchsubjects;on the other,researchershave defendedthe trials
with utilitarianargumentsaboutthe largerbenefitto society. But as Rebecca
Smith of ACT UP/New Yorkexplainedin a letterpublishedin Science, the
solutionwas preciselyto find pointsof convergencebetween"theimmediate
short-termneeds of people with AIDS" and the "long-termgoals of medical
research"(Smith 1989, 1547). To the extent that methodologicalsolutions
couldbe engineeredthatwouldmakeall partiescomfortable-and thatwould
affirmthe "dualrole"of clinicaltrialsas bothscientificexperimentandhealth
care (ACT UP/New York 1989, 2)-people with AIDS and HIV infection
would willingly participatein the trials and conform to the protocols, and
scientific knowledge would be advanced.
In largepartbecausethis agendawas consistentwith certainpre-existing
stances within clinical medicine, bioethics, and biostatistics and because
activists were able to enroll allies from those domains(see Byar 1990), they
succeededin endowingthe pragmaticperspectivewith additionalcredibility.
In so doing, activists won supportfor a numberof modifications in trial
design including the use of broaderentry criteria, more diverse subject
populations,and concomitantmedication.17But here it is importantto point
to the subsequenthistory,which is somewhatironic.
Over time, as activists themselves have become experts-as they have
absorbedthe vocabularyand culturalframesof mainstreambiomedicinemanyof them have come to voice an increasingfaithin the formalprinciples
of the clinical trial.Indeed,as the hope of a rapidlyavailablecure has faded,
and as the precise benefits of the existing anti-viraltherapieshave become
ever more subject to dispute, at least some of the key treatmentactivists,
particularlyon the East Coast, have now swung over to somethingcloser to
the fastidiousperspectivein the hopes of acquiringat least some "harddata"
thatcan serve as groundbeneaththeirfeet. At the same time, thereare other
activists who now oppose what they label as "conservatism"on the partof
theirpeers, sometimessuggestingthatthose activistshave become detached
from the constituenciesthey claim to representand seduced by the auraof
science.18Such debates have overlappedwith strategicdisputes within the
movementabouttherisksof co-optationandwithresentmentof theperceived
greateraccess to the governmentalandresearchelite by white male activists

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(Corea 1992; Wolfe forthcoming).These tensions have been contributing


factors in formal splits in AIDS activist organizationsin several U.S. cities
(Dobson 1990; Raphael1990). While thereis little or no evidence to suggest
that activists pursuing"insider"strategies have in any fundamentalsense
been "co-opted,"it is nonethelessnoteworthythattheseactivistsarecurrently
more invested in the notion that controlledexperimentationis the path to
medical progress and are more likely to suppose that success will lie with
pharmacologicalproductsas opposedto "natural"or "alternative"therapies.
In the end, it has remainedsomewhat unclearprecisely what kinds of
science activists would like to see practiced.Are AIDS activists reallyjust
trying to "clean up" science by eliminating "biases" that the academic
researchersare introducing?Or are they trying to supplant"clean science"
with somethingthatanswersto differentepistemologicaland ethical aspirations? It may be the tension between these conflicting and ambiguously
definedgoals, morethananythingelse, thatcharacterizesthe AIDS activists'
engagement with the science of clinical trials. Certainly, activists have
rejected a narrowpositivist conception of the clinical trial as a laboratory
experimentpure and simple. Neither have they endorsed a fully relativist
approachto clinical trials,as some SSK analystshave done.
For example, in her absorbinganalysis of the controversybetweenLinus
Pauling and more orthodoxresearchersover whetherVitamin C can help
cancerpatients,Richards(1991,204) arguesagainst"themythof the 'definitive' clinical trial and the neutralevaluation it supposedly entails," which
serves the primaryinterestof professionallegitimation.Ratherthanworship
this false god, Richardssuggests, we might be better off abandoningthe
formal apparatusof the randomizedclinical trial,choosing instead"to learn
to live with the realityof uncertainty"and to introducepolitical,ethical, and
subjectivecriteriainto the evaluationof treatments(pp. 232-34). This "implies a moreprominentrolefor nonexperts,forpatientsandthepublicat large,
in the processes of assessmentand decision making"(p. 5). Quite similarly,
AIDS activistshaveemphasizedthe artifactualandhistoricalcharacterof the
clinical trials methodology,and they have placed a spotlighton the perceptions of the patientas a genuine participantin clinical researchand not just
the object of study. Yet, perhaps as they have become more enculturated
into the biomedical researchprocess, most AIDS treatmentactivists share
with doctors and researchersa profound investment in the belief that the
truthis, in principle, knowable throughsome application of the scientific
method. Although many in the AIDS movement have, at particularmoments, arguedin favorof toleratinguncertaintyas the necessarytrade-offfor
access to experimentaldrugs, in the end, few activists, and perhaps few
people with AIDS or HIV infection,are fully sanguineaboutthe prospectof

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"[living] with the reality of uncertainty."This is not surprisingbecause


activists, and people with AIDS and HIV,are confronteddaily by a burning
need to know whethergiven treatments"work"or not, and such need does
not typically take comfortin relativism.The activistcritiqueof the randomized clinical trialunseatsthatmethodologyfrom the pinnacleon which it is
sometimes placed, but it also assumes a greaterrole for such trials than
analystssuch as Richardswould recommend.

Participatory Knowledge Making


in Biomedicine
My analysis of these techniquesfor establishingcredibilitysuggests that
certainparticularkinds of social movements,when pursuingcertaindistinctive strategies, can acquire credibility within certain specific domains of
scientific practice. It matteredthat biomedicine is relatively more open to
outside scrutinythan are other arenasof science and technology (Cozzens
and Solomon 1994). This is especially true of clinical trials, where people
with AIDS or HIV were constitutedas participantsfrom the startand thus
could claim to have a uniqueand importantperspectiveon the process-that
is, they could generate"situatedknowledges,"to use Haraway's(1991, chap.
9) termfor "partial,locatable,criticalknowledges"generatedby social actors
on the basis of their social location. But it also matteredthat activists were
able to masterthe technical arcana in ways that even credentialedexperts
found impressive; that they were able to make effective use of existing
differencesof opinion among credentialedexperts;and that they were able
to weave back andforthbetweenepistemological,methodological,political,
andethical claims to constructpowerful argumentsthat provedeffective in
bothspecialized and public arenas.19
Once activists succeeded in establishingtheircredibility,they were able
to gain representationon NIH andFDA advisorycommittees,on institutional
reviewboardsat local hospitalsandresearchcenters,on communityadvisory
boardsestablishedby pharmaceuticalcompanies, and, most recently, on a
national board created by the Clinton administrationand charged with
overseeingthe entirecourse of AIDS research.Of course, some researchers
andgovernmentofficials havedeemedit strategicto incorporateactivistsinto
theprocess. As Fauci (1994) put it, the assumptionwas that "on a practical
level, it would be helpful in some of ourprogramsbecause we neededto get
a feel for what would play in Peoria,as it were."But, in general,this recent
reconfigurationof the boundaries(Gieryn 1983) between the "inside"and
the"outside"of biomedicinehas been the outcomeof struggle.Such activism

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is "self-helpwith a vengeance,"as IndykandRier (1993, 6) put it nicely; the


projects of these activists surpass, in scope and character,those of more
typical patient self-help groups (Stewart 1990; von Gizycki 1987).20By
introducingnew "currencies"of credibilityinto circulation,andby succeeding in establishing a value for those currencieswithin the scientific field,
activists in effect have transformedthe field's mechanisms of operation
(Bourdieu1990). In certainrespects,they have transformedhow biomedical
knowledge gets made (Epstein 1993).
Of course,the capacity(or desire)of activiststo pose genuinelyepistemic
challengesto biomedicinehas been limited.For the most part,activistshave
been more interestedin participatingin science-or assertingthe simultaneous importanceof values other than the pursuitof science-than they have
been in transformingthe practicesby which science constitutesknowledge.
Still, the argumentsof AIDS activists have been published in scientific
journalsandpresentedat formalscientificconferences(Barr,Harrington,and
Lipner 1992; Delaney 1989; Smith et al. 1992); theirpublications,as Indyk
and Rier (1993) argue,have creatednew pathwaysfor the disseminationof
medical information;theirvoice and vote on review committeeshelp determine which studies receive funding;theirefforts have led to changes in the
very definitionof AIDS to incorporatethe HIV-relatedconditionsthataffect
women (Corea1992);theirinterventionshave led to the establishmentof new
regulatoryandinterpretivemechanismsby the FDA andthe NIH (Jonsenand
Stryker1993; Edgarand Rothman1990); and theirargumentshave brought
about shifts in the balance of power between competing visions of how
clinical trialsshouldbe conducted.Althoughactivistshave neverestablished
absolutejurisdictionover any contested scientific terrain,they have, to use
Abbott's(1988) term,won the rightsto an "advisoryjurisdiction,"analogous
to the relationof the clergy to medicine or psychiatry.Of course, as Abbott
notes, advisoryjurisdictions are characteristicallyunstable, "sometimes a
leadingedge of invasion, sometimesthe trailingedge of defeat"(pp. 75-76).

The Broader Impact of AIDS Treatment Activism


Does the storyof thisparticularsocial movementhave implications,either
practicalor theoretical,beyond the case of AIDS? On the one hand, if one
looks at the extent of lay participationin different dimensions of AIDS
research,it is clear that this is not the typical case in science. On the other
hand, if one considers experienceselsewhere in biomedicine,the potential
impactof the credibilitystrugglesin AIDS researchmightbe great.Consider
some vignettes from recenthistoryin the United States:

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At an international
conferenceon Lyme disease held in Arlington,Virginia,in
thathadbeenrejectedby theorganizerswerereinstated
1992,severalpresentations
at the last minute.The programchangescame in responseto "populardemand"
by supportgroupsof Lymedisease patients.One programcommitteemember
who "wasn'teven consulted"about the change describedhimself as "damn
annoyed":"Thereis science and there is nonscience,and nonsciencedoesn't
belongat a scientificmeeting,"he toldSciencemagazine(Barinaga1992, 1385).
* In 1991, more than 180 U.S. advocacy groups came together to form the
National Breast CancerCoalition. "They say they've had it with politicians
andphysiciansandscientistswho 'there,there'themwith studiesandstatistics
and treatmentsthat suggest the disease is under control,"read a prominent
accountin the New York7imesSundayMagazine(Ferraro1993, 26). The debt
to AIDS activism was widely noted by activists and commentatorsalike
(Krieger1991). "Theyshowed us how to get throughto the government,"said
a Bay Area breast cancer patient and organizer."They took on an archaic
system and turnedit aroundwhile we have been quietly dying"(Gross 1991,
12). Anotheractivistdescribedhow she met with the staff of AIDS Treatment
News to learntheropesof thedrugdevelopmentandregulatorysystems(Gross
1991, 12).
* When a drug manufacturingcompany violated its promise to continue supplying an experimentaldrug to chronic fatigue patientsfollowing the termination of the clinical trial in which they participated,the research subjects
foundtheirway to a ProjectInformboardmember,who helped them prepare
a lawsuit. The boardmembertold the gay press in 1991 thatif it had been an
AIDS drugtrial,therewouldhavebeen a politicaluproar(Kingston1991, 8).
In fact, the past few years in the United States have seen an upsurge of
health-related activism of a distinctive type: the formation of groups that
construct identities around particular disease categories and assert political
claims on the basis of those new identities. To be sure, not every such group
owes directly to AIDS activism, although the tactics and political vocabulary
of organizations such as ACT UP would seem, at a minimum, to be "in the
wind" (see Wachter 1992). Thus far, none of these groups has engaged in
epistemological interventions that begin to approach, in their depth or extent,
AIDS treatment activists' critiques of the methodology of clinical trials. But
what most such groups appear to share is a certain suspicion of biomedical
claims making; an emphasis on empowerment and a repudiation of "victim"
status; a push toward greater equality in the doctor-patient relationship; and
the demand for a greater role for patient groups in determining research
priorities, assessing research findings, or making regulatory or policy decisions on the basis of those findings.
To varying extents, these groups challenge the hierarchical relations
between experts and laypeople and insist on the rights of those affected by
biomedical science to participate in its production. As opposed to those

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movementsthatconfrontexpertiseby finding theirown expertsto represent


them-what Gaventa (1985) has called the "hired gun" approach-these
movementsseek "tobreakdown the distinctionbetweenthe researchersand
the researched,the subjects and objects of knowledge productionby the
participationof the people-for-themselvesin the process of gaining and
creatingknowledge"(p. 35).
Here, however, it is importantto stress some complicationsto this story.
Given the precedingaccount,it shouldbe clearwhy such activism,no matter
how broad ranging it becomes, will face an uphill battle in thoroughly
transformingthe kinds of knowledge-basedhierarchiesthat structurecomplex and differentiatedsocieties. In fact, my analysis suggests a significant
tension in the AIDS movement's relation to its project of democratizing
expertise.On the one hand,by pursuingan educationalstrategyto disseminate AIDS informationwidely, activists have promotedthe developmentof
broad-basedknowledge empowermentat the grassroots.On the otherhand,
as activist leadershave become full-fledged experts,they have often tended
to replicatethe expert/laydivision withinthe movementitself by constructing
whatElbaz (1992,488), in ananalysisof ACTUP/New York,describesnicely
as a divide between the "lay expert"activists and the "lay lay" activists.
Arguably, it was not possible for the core treatmentactivists to become
experts on clinical trials and sit on the NIH committees without, in some
sense, growingcloserto the worldviewof theresearchersandwithoutmoving
a bit away from their fellow activists engaged in other pursuits.Similarly,
activists themselves seem torn about whethermechanismsof participatory
democracy are automaticallyof value in the struggle to develop effective
therapiesor whetherscientific"progress,"howeverunderstood,mightindeed
be facilitatedby an "antidemocratic"
reliance on relationshipsof trust and
authorityand by the delegationof science to "theexperts,"now understood
to include a smatteringof autodidactactivists.
Certainly,however we understandthese complexities, the experience of
AIDS activismsuggests the need for social analyststo attendto the particular
strategies pursuedby lay actors in their attemptsto speak credibly about
science and medicine. Negotiations over credibilityin AIDS research(and
perhapsoften elsewhere) are multilateralin the sense of involving many
differentplayers. They are also multilayeredin that those negotiationshelp
determinewho is credible,which knowledgeclaims are credible,and which
ways of doing biomedicalresearcharecredible.A full-fledged analysisof the
negotiationof credibility in such cases entails a broadeningof our understandingof medicineandscience to encompassactorswho aremoretypically
ignored-the producersof subjugatedknowledges,to borrowa phrasefrom
Foucault.In this particularcase, I have emphasizedthe need to pay specific

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attentionto the role of a social movement;and, in fact, while the analysis of


social movementshas been commonplaceelsewhere, it has been relatively
underdevelopedin both the sociology of medicine and the sociology of
science. The case of AIDS treatmentactivism suggeststhat so-called "new
social movements" have distinctive forms of engagement with science and that
the engagement with science shapes such movements in quite distinctive ways.
An extended study of the relation between biomedicine and social movements
could provide for a deeper and more comprehensive analysis of the construction
of medical knowledge and the transformationof medical practice.

Notes
1. Indeed, many analysts,includingfoundersof the sociology of science such as Merton
(1973, 257-60) butalso contemporarytheoristssuch as Bourdieu(1975,1991), have locatedthe
practicalefficacy of science preciselyin its insulationfrom externalpressures.
2. This conceptualizationis intendedto echo Bourdieu's(1990) theoryof agonistic social
action within "fields"(champs).However,Bourdieu(1975, 1991) himself pays scant attention
to the role of laypeoplein his depictionof the scientificfield. Fora generalcritiqueof Bourdieu's
characterizationof scientific practice,see Knorr-Cetina(1982).
3. On the historyandpolitics of clinicaltrialsin general,see Marks(1987), Meldrum(1994),
and Richards(1991).
4. On the role of scientificadvisorybodies in the constructionof "regulatoryscience,"see,
moregenerally,Jasanoff(1990).On drugregulation,expertise,andtrust,see also Abraham(1994).
5. On the engagementof AIDS activistswith biomedicalresearch,see also Altman(1994),
Arno and Feiden (1992), Corea(1992), Crowley(1991), Horton(1989), Indykand Rier (1993),
Patton(1990), Treichler(1991), and Wachter(1991).
6. This conceptionof scientific credibilityhas affinitieswith Cozzens's (1990) definition
of scientific "power"as enrollmentcapacityplus legitimacy.
7. Bibliometricanalyses(Elford,Bor, and Summers1991; Lyonset al. 1990; Self, Filardo,
and Lancaster1989; Senguptaand Kumari1991) andco-citationanalyses (Small and Greenlee
1990) of AIDS research, however valuable, miss this crucial point. They begin with the
unwarrantedassumptionthatthedomainconstitutiveof knowledgeaboutAIDS can be delimited
by referenceto the professionaljournals.On the unusualpathwaysof influencein AIDS research
and publication,see IndykandRier(1993). The "socialworlds"approachto the studyof science
(Clarke1990; Fujimura1992; StarandGriesemer1989) may be particularlyhelpfulin conceptualizingthe politics of knowledge in the case of AIDS. Drawingon the interactionisttradition
in sociology, the proponentsof this perspective analyze the "negotiationcf order" in the
encounterbetween different"social worlds,"or "groupswith sharedcommitmentsto certain
activities sharingresourcesof manykinds to achieve theirgoals"(Clarke1990, 18). Withinthis
frame of reference, the science of AIDS can be viewed precisely as the product of the
encounter-or clash-between membersof many differentsocial worlds.
8. But see Brante, Fuller, and Lynch (1993), Indyk and Rier (1993), Kling and Iacono
(1988), Moore (1993), and Petersenand Markle(1981).
9. On the AIDS movement(or, more specifically,ACT UP) as a characteristically"new"
see Gamson(1989).
socialmovementthatengagesinarepresentational
politicstoresist"normalization,"

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10. Much like scientists,doctors,and the media, social movementsare actively engaged in
the constructionof realitythroughthe impositionof organizing"frames."See Gitlin (1980) and
Snow and Benford(1988).
11. On the AIDS activistrepudiationof the "victim"designation,see Navarre(1987).
12.In thissense,AIDStreatment
activistsdifferfromgroupssuchas animalrightsactivists(Jasper
andNelkin1992),whowillhavenotruckwith' heenemy"intheirconfrontations
withmedicalresearch.
13. Whetherthe adoptionof the languageof science compromisesthe capacityof activists
to speak in "theirown voice" is a questionto which I returnlaterin this article.
14. Of course, some groups,such as AfricanAmericans,who have been subjectto abuses in
scientific experimentationin the recent past may be far less inclined to desire entry into such
experimentsthanwill middle-class,white gay men. On the legacy of the Tuskegeesyphilis study
in influencingAfricanAmericanperceptionsof AIDS research,see Thomasand Quinn(1991).
15. Similardynamicsin the relationbetweenintra-expertcontroversyandsocial movements
have been notedby Balogh (1991, 307) in the case of antinuclearactivists.
16. Clearly,there is an implicit critiquehere of the incorporationof culturalmetaphorsof
"cleanliness"and "purity"into scientificdiscourse.On the culturalsignificanceof metaphorsof
purity,see Douglas (1979). On the "sacred"characterof "purescience,"see Restivo (1990).
17. Many such changes were already in place in clinical trials for cancer therapies, as
biostatisticianswho hadmoved fromcancerresearchto AIDS were well aware(Ellenberg1994).
In this sense, too, activist victories dependedheavily on the existing balance of forces within
biomedicine.I am gratefulto Evelleen Richardsfor discussionof these issues.
18. Withregardto certainissues, such as the use of placebo controlsin randomizedclinical
trials,manyactivistsnow characterizetheirinitialstancesas naive.Thusalthoughactivistswrote
in 1988 that "it is unethicalto use any placebo in a groupof seriously ill subjects"(Eigo et al.
1988, 24), nearlyall treatmentactivistsnow endorsethe use of placebocontrolswhen no therapy
has been found to be efficacious for a condition(Harrington1994).
19. To the extent that the capacityof activiststo participatein AIDS knowledge makinghas
been linked to the special role of patientsas necessaryparticipantsin clinical research,it will be
interestingto see what happensas AIDS treatmentactivistsincreasinglyfocus theirattentionon
basicresearch.This movementhasbeen spurredby theperceptionthatexistingantiviraltherapies
are relatively ineffective and that the developmentof better treatmentspresupposesa clearer
understandingof the immunopathogenesisof HIV infection (Gonsalves 1993). In focusing on
basic research,however, it is less clear whetheractivists possess a special vantagepoint from
whichto contributeto the productionof knowledgedespitethe fact thatsome of themhavebegun
spendingtime as observersin immunologylabs at NIH (Fauci 1994).
20. A closer analogywould be the "popularepidemiology"practicedby some groupswithin
the toxic waste movement(see Brown 1992). See also Di Chiro(1992) on lay expertise in the
environmentaljustice movement.

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science. Public Understandingof Science 1:281-304.

StevenEpsteinis an assistantprofessor in the Departmentof Sociologyat the University


of California,San Diego (9500 Gilman Drive, Department0102, La Jolla, CA920930102). He is also affiliatedwith the Science Studies Programthere. His book, Impure
Science: AIDS Activism and the Politics of Knowledge, will be published by the
Universityof CaliforniaPress in 1996.

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