Analyzing AIDS Controversies

Credibility and Trust in Scientific Fact-Making

The sociology of scientific knowledge is particularly well suited to shedding light on such phenomena as scientific controversy, credibility crises, and the public trust and distrust of experts: this body of work identifies credibility and trust as the very underpinnings of scientific knowledge-production. Not just relations between laypeople and experts, but also relations among scientists themselves are enabled by the social organization of trust and the construction of credibility.

Since its inception in the 1970s, the sociology of scientific knowledge has argued that scientific fact-making is a collective process amenable to sociological investigation.^[49] As Steven Shapin explains, "no scientific claim 'shines with its own light'—carries its credibility with it. …" Analysts of science have therefore "become intensely interested in the specific processes of argumentation and political action whereby claims come to be accepted as true or rejected as false."^[50] In practice, a range of theories has been offered as to how the credibility of knowledge claims is secured.^[51] For Bruno Latour and his colleagues and collaborators, credibility is the stake in an agonistic struggle. In this approach, science is "politics by other means," and the credibility of a knowledge claim depends on the play of power: the scientist who can appear to make nature "behave" in the laboratory, whose rhetoric is more persuasive, who is able to summon up the more compelling

citations, and who is able to enlist more allies, patrons, and supporters by "translating" their interests so that they correspond with the scientist's own is the one who constructs credible knowledge and gains access to further resources as a result. The most effective claims are those which become "obligatory passage points": the journal article that all must cite to justify their own work, the technology that all must employ to accomplish their own research—in general, the way stations through which other scientists, patrons, or members of the public necessarily must pass in order to satisfy their interests or achieve their goals. The more well traveled such passage points, the more fully institutionalized the knowledge claims become.^[52]

Alternatively, analysts such as Barry Barnes, Harry Collins, and Steven Shapin, while emphasizing the role of conflict, also understand scientific credibility as emerging from the nexus of cooperative relationships that constitute scientific communities.^[53] Since no one can "know" all or even a fraction of the corpus of scientific knowledge through direct experience, science is made possible through the allocation of trust. "Trust and authority," writes Barnes, "are the wires of a great system of communication which makes the specialized knowledge of society widely credible and widely usable."^[54] Clearly, laypeople are almost always in the position of having to trust what experts tell them is true. But trust is crucial even to the relationships among scientists, as Collins demonstrates in his arguments concerning the phenomenon of "experimenters' regress": "The competence of experimenters and the integrity of experiments can only be ascertained by examining results , but the appropriate results can only be known from competently performed experiments."^[55] Independent replication of a finding does not resolve the dilemma of whether to believe, because no two experiments are ever exactly the same in all details, and so the status of an experiment as a replication must also be socially negotiated. In order, then, for any finding to be accepted, scientists cannot be utter skeptics. Either they must trust that the experiment was competently performed (thus granting credibility to the result) or they must trust the result (thereby conceding that the experiment was competently performed). At any given moment, some knowledge must be taken on faith, if science is to proceed as a social institution. Even expressions of distrust are "predicated upon a background of trust," explains Shapin: a scientist cannot distrust a particular finding or person except against the background of other shared knowledge which is unproblematically trusted.^[56]

These conceptions of the social relations that govern scientific knowledge-production have several implications for understanding cases such as AIDS research. First, these analyses suggest that scientists, other professionals, and laypeople alike find themselves frequently in the business of assessing the credibility of knowledge claims and claimants, and asking who or what they should trust and believe. The difficulty is that—for laypeople and to a considerable extent for experts as well—such assessments can usually be made only indirectly, through the scrutiny of external markers of credibility. Who conducted the study? Where was it published? What does the New York Times have to say about it? What does my doctor think? Even such everyday iconography as the diploma on the wall serves an important signaling function within a social system stitched together by assertions and assessments of credibility.^[57]

Second, this understanding of credibility implies a special role for certain face-to-face interactions, such as those between doctors and patients. In a world significantly organized by impersonal bureaucracies, doctors serve as "'access points' … at which 'faceless institutions' present a particular human face to those who encounter and pass through them."^[58] Doctors are among the experts that laypeople are most likely to encounter firsthand; their credibility can be read in their words, body language, and "bedside manner." This social location gives practicing physicians a distinctive function in controversies involving doctors, patients, and scientists.

Third, since trust and credibility may be fragile resources, scientists, doctors, and other experts are keenly attuned to potential disruptions in the social circulation of credibility. In effect, scientists barter their credibility for the extension of resources by patrons and the public, who typically stand back and respect the autonomy of scientists, allowing them to determine the specific division and allocation of research funds, judge one another's work, and police abuses.^[59] One consequence of this arrangement for the expert claims-maker is that maintaining legitimacy (both one's own and that of science in general) becomes of paramount importance: when legitimacy is threatened, the credibility of one's claims is in jeopardy, and with it, the availability of resources and the maintenance of professional autonomy.^[60] Like other professional groups, scientists frequently participate in shoring up their legitimacy,^[61] including engaging in public relations work and attempts to manage the presentation of scientific findings in the mass media.^[62] This labor is made difficult by the number of factors that can

diminish the public's perception of the legitimacy of science, including instances of scientific fraud, malpractice, and incompetence; technological disasters; the failure to solve problems considered socially significant; the perception that scientists are "crossing the line" into politics or advocacy; admissions of uncertainty on the part of experts; and dogmatic professions of overcertainty.^[63] The very existence of disputes between experts can cause legitimacy problems for science, given the "belief that science 'naturally' produces consensus by the collective pursuit of 'the scientific method.'"^[64]

The AIDS crisis is a case in which the normal flow of trust and credibility between experts and laypeople has been disrupted. The autonomy of science has therefore been challenged; outsiders have rushed into the breach. But something else has happened as well: some of those outsiders, particularly groups of AIDS activists, have constituted themselves as a new class of "lay experts" and put forward their own claims to speak credibly about the epidemic.

Science Studies and the Problem of Knowledge-Making from Below

How do we analyze moves on the part of AIDS activists to assert and assess scientific credibility? In a recent summary of credibility studies in the sociology of scientific knowledge, Shapin takes it as a point of methodological principle that "there is no limit to the considerations that might be relevant to securing credibility, and, therefore, no limit to the considerations to which the analyst of science might give attention."^[65] Nevertheless, analysts of science have paid little attention to the specific and novel mechanisms by which lay outsiders establish beachheads of credibility on the terrain of modern scientific institutions.

In Collins's influential formulation, knowledge in scientific controversies is made by a relatively small "core set" of researchers.^[66] Collins notes that members of the public may rely on other experts to challenge the claims of the core set. But he offers no discussion of the processes by which laypeople can construct alternative ways of knowing or new varieties of expertise that—sometimes—alter the pathways of knowledge construction.^[67] Restricting analysis to a core set of experts makes little sense in controversies where part of what is "up for grabs" is who gets to count as an expert and which set of characteristics qualify one as such. Collin's own studies of parapsychology

demonstrate precisely this point.^[68] But most appropriations of his notion of the "core set" use the term as synonymous with a small circle of insiders. Similarly, Latour's "actor-network" theory assumes in principle that, just as scientists may enroll laypeople in support of scientific facts and approaches, so laypeople may attempt to enroll scientists. But in practice, as a number of critics have pointed out, Latour and his collaborators "have not developed the implications" of this assumption^[69] and have opted for what Susan Leigh Star criticizes as the "executive approach," in which it is assumed that the powerful scientist does the claims-making and seeks to recruit others, including laypeople, behind his or her banner.^[70]

How can science be studied without assuming in a priori fashion which groups at which social locations create scientific knowledge? It would be wise to take seriously Latour's injunction simply to "follow the actors" wherever that may lead the analyst and not to worry about what is really "inside" and "outside" of science.^[71] Indeed, social studies of science have stressed that the boundaries between what is internal and what is external to science are themselves constructed in the course of scientific practice—that scientists perform "boundary work" to circumscribe a domain they can then call their own.^[72] Another school of science studies, which draws on the interactionist tradition in sociology, is also helpful in thinking about a case such as this one. These analysts study the "negotiation of order" in the encounter between different "social worlds"—"groups with shared commitments to certain activities sharing resources of many kinds to achieve their goals."^[73] From this frame of reference, the scientific study of AIDS can be viewed precisely as the product of the encounter—or clash—between members of many different social worlds. Phenomena such as a virus, a medication, or a clinical experiment, in this view, may have the status of "boundary objects": each one has an identity that cuts across social worlds, but understandings of the phenomenon may vary in subtle yet significant ways depending on the social standpoint from which it is viewed.^[74]

Each participating social world can be treated as distinct, at least for analytical purposes, yet somehow out of their intersection there emerges a field that generates knowledge about AIDS. The borders of this field may be relatively porous, its parameters may be evolving over time, but it has an emergent logic—itself the product of negotiation and cooperation—that conditions the practices of the diverse actors within it. In my conception of the "field" of AIDS research and knowledge production, I am influenced by the work of Pierre Bourdieu, who

describes fields as specific, relatively autonomous, domains of social action—domains of social production and reproduction—that both reflect and constrain the interests, positions, strategies, and investments of the actors within them.^[75] Inside each field, players compete with one another subject to the current rules of the game, but in so doing they seek to reshape the rules to suit the means at their disposal.

This is precisely what emerges in credibility struggles related to AIDS—the constant attempt by different players to rephrase the definition of "science" so that their particular "capital"—their forms of credibility—have efficacy within the field. Or as the AIDS activists in Boston put it: "We're here to show defiance / for what Harvard calls 'good science.'"^[76] To understand the dynamics of such negotiations, however, it is useful to look beyond the domain of science studies. Studies of social movements, the media, and the professions all offer important resources for analyzing the politics of knowledge in AIDS research.

Science Studies and Social Movement Research

The relation between activism and science has been considered from a variety of directions by scholars working within the sociology of social movements, the sociology of science, and other fields. Analysts have investigated such topics as the reliance of some activist movements on outside, credentialed expertise,^[77] the antipathy of groups such as the animal rights movement toward the scientific enterprise,^[78] the formation of activist groups or advocacy movements by scientists or professionals themselves,^[79] and even the tendency of delegitimated clusters of scientists to work in ways that resemble social movements.^[80]

Few studies, however, have explored the role of movements in the construction of credible knowledge, and few sociologists of scientific knowledge have engaged significantly with the sociological literature on social movements.^[81] To understand the complex dynamics of the field of AIDS research and in particular to conceptualize the interventions of organized groups of laypeople in scientific practice, it makes sense to borrow generously from this literature. On one hand, attention to the means by which social movements engage in claims-making—how they mobilize,^[82] how they construct collective identities,^[83] how they "frame" social issues and represent reality^[84] —can shed light on their capacity to engage with medical and scientific

expertise. On the other hand, it is worth asking how the encounter with science affects the social movement in turn: in what ways does this engagement transform the movement's collective identity, mobilization potential, framing practices, and representational strategies?

James Petersen and Gerald Markle apply the "resource mobilization" perspective (a dominant approach within the study of social movements) to the cancer treatment movement, analyzing how activists "try to form coalitions, seek sponsorship, and appeal to a wider audience … as a means of increasing their movement resources."^[85] And Debbie Indyk and David Rier likewise emphasize resource mobilization in their useful analysis of the particular case of alternative knowledge-production in the AIDS epidemic.^[86] But analysts of science have paid little attention to the extensive theoretical and empirical literature on "new social movements"—works describing the ecology movement, the women's movement, the antinuclear movement, racial and ethnic movements, the gay and lesbian movement, and so on—a literature with obvious relevance to the study of the AIDS movement.^[87]

Theorists of new social movements differ greatly in their approaches to the topic, though most tend to agree that the actors within the new movements are drawn primarily from the "new middle class" or "new class" of culture producers, particularly that strand of it that Alvin Gouldner calls the humanistic intelligentsia.^[88] But unlike in working class politics, the class character of these movements is not emphasized by the activists. They are involved not (or at least not only) in a distributive struggle, where a quantity of resources is being parceled out to competing groups, but in a struggle over cultural forms—what Jürgen Habermas calls the "grammar of forms of life,"^[89] Their emphases tend to be on "personal and intimate aspects of human life," their organizations tend to be "segmented, diffuse, and decentralized," and their theatrical protest tactics emphasize civil disobedience and a politics of representation.^[90]

An epidemic whose social definition lies at the intersection of cultural discourses about sexuality, the body, and identity is, arguably, the ideal staging ground for the emergence of a new social movement. Perhaps most significantly, the politics of AIDS are interwoven at the deepest level with the explosive politics of sexuality in contemporary Western societies. "It would be difficult to imagine a more powerful or urgent demonstration than the AIDS crisis of the need to conceptualize sexuality, after the manner of Foucault, as 'an especially concentrated point of transversal … for relations of power,'" writes David Halperin.^[91]

AIDS activists have sought to challenge the ideological linkages between sex and death and put forward "sex-positive" programs of AIDS prevention that assert the right to sexual pleasure and sexual freedom.

The body, another key site for the elaboration of AIDS activism, is "the tangible form of selfhood," the "symbolic frame through which [the] paradoxes of existence are most powerfully mediated."^[92] But as Alberto Melucci notes, in the contemporary period the body has also "become a field of action on which social and cultural contradictions are delineated."^[93] This is perhaps most obviously true when the body is confronted by the physical threat of annihilation through disease: it can itself become the most potent signifier of crisis and resistance.^[94] "We in the communities most touched by AIDS have learned that the ultimate site of this struggle is the body," commented ACT UP/New York activist Jim Eigo in a presentation at a scientific conference: "So here I am, my own and my only audiovisual aid. There will be no `next slide.'"^[95]

Central to the self-understanding of new social movements is the focus on the values of autonomy and identity. Yet the salient feature of the new social movements is not so much that they assert identities as the fact that the actors within them are conscious of their own active involvement in a public and contested process of identity construction.^[96] While the constitution of identity may sometimes become an end in itself, William Gamson argues that it also serves an instrumental function in the mobilization process, influencing not only people's willingness to "invest emotionally" in the fate of the movement and "take personal risks on its behalf" but also their choices of strategies and organizational forms.^[97]

These are exactly the characteristics one finds in ACT UP, which was, in the late 1980s and early 1990s, the premier social movement organization within the broader AIDS movement. ACT UP "operates largely by staging events and by carefully constructing and publicizing symbols"; its theatrics "are part of a continuing process of actively forging a gay identity while challenging the process through which it is formed for gay people at a time when the stigma of disease has been linked with the stigma of deviant sexuality."^[98] This emphasis on identity politics has, in certain crucial respects, facilitated AIDS activists in their capacity to engage with scientific knowledge-production. Because identity politics are preoccupied with nonmaterial issues— with questions of representation and meaning—these activists are

inclined to wage struggles over the definition of reality. And because identity politics stand in opposition to what Foucault calls "normalization," these defenders of identity are highly sensitive to the imposition of norms, categories, and labels by outside authorities.^[99] Drawn often from the ranks of those with significant cultural capital, AIDS activists have both a greater inclination and capacity to participate in the construction of social meanings and challenge the purveyors of "symbolic violence."^[100]

The Media and the Construction of Credibility

The AIDS movement's possession of cultural capital and its facility with manipulating symbols are manifested in another way that is central to the story I tell—the movement's possession of its own media institutions. A large number of studies have emphasized the important role of the media in establishing the public dimensions of scientific and medical controversies. Such studies reveal how the media filter and translate scientific information, construct public images of scientific certainty and uncertainty, shape the ways in which people understand the "sides" and "boundaries" of a debate, certify scientific and medical celebrities, affect perceptions of risk, and reinforce popular stereotypes of scientists and doctors as both heroes and villains.^[101] David Phillips and his collaborators have shown that even professional scientists rely on prominent mass media organs, such as the New York Times , to provide them with a sense of which scientific findings are most important, and that "the direct transmission of information in the medical literature … is enhanced or amplified by secondary transmission in the lay press…."^[102] By the same token, the mass media can bring the perspectives of delegitimated actors into the public eye. As Bert Klandermans explains in a study of social movements, the media "are able to diffuse beliefs the organization itself would never had been able to diffuse," with the result that "the movement organization itself gains greater credibility…."^[103]

The analysis in this book reinforces the notion that the institutions of the mass media can play a critical role in shaping how scientific controversies are interpreted and adjudicated. But in addition, I emphasize the impact of alternative media institutions, including the lesbian and gay press, movement publications, and grassroots literature about AIDS treatments.^[104] The extensive coverage of medical and scientific

issues in these publications has been a significant factor in the construction of knowledge-empowered communities, and the particular analytical frames employed by writers and editors have helped shape the orientations of the AIDS movement. Indeed, some media organs of the AIDS movement, such as the publication AIDS Treatment News , are widely recognized as agenda-setting vehicles for the circulation of scientific knowledge, and are read by activists, doctors, and researchers alike.^[105] Such developments pose an important challenge to the conventional "top-down" models of how expert knowledge is disseminated.^[106] As Indyk and Rier suggest, the spread of knowledge about AIDS is best conceived as "a multisite process, involving not hierarchies of diffusion but webs of exchange."^[107]

Medicine and the Professions

The sociology of the professions is also of particular relevance to the study of credibility and expertise, since professionalism, as Andrew Abbott notes, is precisely "the main way of institutionalizing expertise in industrialized countries."^[108] A crucial focus of my study is the relations between professional groups and lay clients, and I take seriously Foucault's suggestion that this is a pivotal arena of struggle in modern societies—that power is manifested in the ability of professionals to label, classify, and condemn, as well as in the capacity of clients to resist the imposition of such meanings.^[109] However, my analysis also seeks to avoid reifying the categories "professional" and "layperson" as if they were invariant or monolithic entities. I therefore analyze tendencies toward professionalization within social movements that engage with expert knowledge.

Furthermore, my analysis assumes that the interests of the various researchers and doctors who figure in the AIDS controversies are shaped by their specific relations to organizations, institutions, and social groups. For example, I analyze the fundamental differences in interest and orientation between biomedical researchers, whose primary commitment is to science, and practicing physicians, whose immediate commitment is to patients. As Eliot Freidson notes, medicine is an "impure" social form—a profession with a lay clientele, coexisting with a scientific community of peers.^[110] In debates over how to interpret research findings, practitioners of the healing "arts" who are in direct contact with patients may produce different readings than researchers who are invested in a conception of biomedicine as

"science"—and, of course, some individuals occupy both roles simultaneously.^[111] In analyzing such debates, this study seeks to reinforce the emerging links between studies of medical practice that have been central to the sociology of medicine and analyses of knowledge production that have been developed by the sociology of science.^[112]

Constructing Social Reality

Although an understanding of the AIDS controversies demands broad attention to science, medicine, the professions, social movements, and the media, my employment of the various theories and concepts from these literatures does reflect an underlying commonality. In each case, I am concerned with theoretical perspectives that emphasize the active, collective, and competitive construction of the social world: how do individuals and groups diagnose social problems and propose solutions?^[113]

The notion of "framing" is used commonly as a metaphor to describe the constructive dimension in different arenas of social practice—a metaphor that resonates clearly with conceptions of claims-making and translation in science studies. Frames are "principles of selection, emphasis, and presentation composed of little tacit theories about what exists, what happens, and what matters."^[114] Frames impose order upon experience—but never arbitrarily or neutrally. Todd Gitlin provides the telling example of reporters' use of the crime story as a frame for understanding political protest.^[115] Charles Rosenberg has analyzed how diseases come to be framed, in particular through attributions of causality and blame, and he describes how diseases, once framed, can then serve as frames for the organization of other social phenomena (as when for example we speak of "social lepers" or "computer viruses").^[116] And somewhat similarly, analysts of "social problems" describe the role of claims-making in the genesis of "typifications"—the identification by an actor of the true "nature" of some problem and its "typical" manifestations—and in the assertion of group "ownership" over various social issues and how these issues are defined and conceived.^[117]

Analogously, as the promoters of a "dramaturgical" model of social movement activism have usefully contended, social movements are not simply "carriers" or "transmitters" of ideology but are fundamentally and necessarily engaged in the framing of reality.^[118] Social movements seek to "frame, or assign meaning to and interpret, relevant events

and conditions in ways that are intended to mobilize potential adherents and constituents, to garner bystander support, and to demobilize antagonists."^[119] Frames serve as "accenting devices" that underscore the seriousness of movement claims, they promote the attribution of blame and causality, and they help activists to "align" events and experiences into digestible "packages."^[120]

Each of these perspectives is useful in understanding the varied contributions of the key players in the construction of credible knowledge about AIDS. To engage in the politics of knowledge, individuals and groups must be able to present themselves as credible representatives of social interests and engage in the framing of reality through techniques of representation. They must be able to mobilize a constituency by framing or translating issues and interests in ways that attract adherents. And they must succeed in constructing enabling identities with relatively well-defined boundaries.^[121] Different actors will seek to frame AIDS, or construct knowledge, or assert their claims to expertise in quite different ways depending in part on their interests, their social locations, and the organizations to which they belong. By means of these framings, credible knowledge is both assembled and taken apart.

This review of the claims-making practices of scientists, professionals, activists, and the mainstream and alternative media confirms that, indeed, "there is no limit to the considerations that might be relevant to securing credibility…."^[122] Credibility, as I use the term, rests on the dual supports of power and trust.^[123] On one hand, credibility is both a stake and a weapon in the skirmishes between all those who are in competition to say what the world is like. On the other hand, credibility is the mechanism for forging durable relationships within which knowledge can reliably be exchanged. The construction of credibility is thus simultaneously an outcome of the competing forces brought to bear in struggles and a marker of the thickening of social ties.

The achievement of credibility can be demonstrated by its real-world consequences: Are claims accepted or rejected in different fields? What language is used to qualify or characterize scientific claims (there is a huge difference between "Many scientists believe that AIDS is caused by a virus called HIV" and "HIV, the AIDS virus, …")?^[124] Are the evaluative capacities of different actors acknowledged or disputed? Who is successful in bringing controversies to closure, and who has the capacity to reopen them? Do the rules of credibility assessment remain fixed, or do they shift in response to struggle?

And crucially, what actions are taken or policies implemented on the basis of credibility granted to claims or to claims-makers?