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San Diego
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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410
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
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417
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
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427
428
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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430
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,"
431
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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