Controversy, Credibility, and the Public Character of Aids Research
It was the first day of classes at Harvard Medical School in fall 1988. As students arrived for the new semester, members of the Boston chapter of ACT UP (the AIDS Coalition to Unleash Power) took positions in front of the building. Equipped with hospital gowns, blindfolds, and chains, the activists broke into a chant: "We're here to show defiance / for what Harvard calls 'good science'!" While some of the demonstrators poured fake blood on the sidewalk, others presented the medical students with a mock "course outline" for an "AIDS 101" class. The outline listed discussion topics like:
PWA's [People with AIDS]—Human beings or laboratory rats?
AZT—Why does it consume 90 percent of all research when it's highly toxic and is not a cure?
Harvard-run clinical trials—Are subjects genuine volunteers, or are they coerced?
Medical elitism—Is the pursuit of elegant science leading to the destruction of our community?
This wasn't a large demonstration; indeed, it was a lesser episode in the annals of AIDS activism. But it suggested the contours of a
distinctive terrain. The concepts embedded in the "course outline" were relatively opaque, especially in contrast with the graphic symbolism of the protest—the blood and the chains. These were no simple slogans of the "Up with this , down with that " variety; each cryptic item hinted at arguments of some depth and complexity. In fact, the activist agenda reflected critical engagement with the nuts and bolts of clinical research into the Acquired Immunodeficiency Syndrome and a desire to take the science of AIDS as seriously as a deadly illness demanded.
These protesters were not rejecting medical science. They were, however, denouncing some variety of scientific practice—"elegant" science, "what Harvard calls 'good science'"—as not conducive to medical progress and the health and welfare of their constituency. To the uninitiated, such a challenge might well be baffling: What would "inelegant" science look like, and why should anyone desire it? What would be the alternative to the "good science" that the medical students were absorbing in their lecture halls? What precisely were the activists claiming, both about the nature of AIDS and the nature of biomedical research? And from where did they derive the authority to make their allegations and proposals?
This book is a study of how varied classes of AIDS experts, diverse conceptions of scientific practice, and distinct claims of knowledge about AIDS have all been generated out of relationships of conflict and cooperation in the United States since the early 1980s. Inside a large and often floodlit arena with a diffuse and porous perimeter, an eclectic assortment of actors has sought to assert and assess credible knowledge about AIDS: biomedical researchers and health care professionals of different stripes; activists, advocacy groups, and people with AIDS or HIV infection; health educators and social scientists; politicians and public health officials; government agencies and advisory committees; pharmaceutical and biotechnology companies; writers, journalists, and the institutions of the mainstream and alternative media. "What we know about AIDS" is the product of this elaborate, often heated, and in some ways quite peculiar complex of interactions.
I seek to identify the pathways by which specific beliefs and spokespersons have become accredited as authoritative: How is certainty constructed—or deconstructed? How are scientific controversies adjudicated? How are debates closed, and what is the character of that closure? Who becomes an "AIDS expert" and by what means? In short, how is the linkage of power, knowledge, and order forged in
the United States in the context of the AIDS epidemic? My analysis shows how knowledge emerges out of credibility struggles —and how the unusual politicization of AIDS in the United States has altered the conduct and resolution of such struggles.
By scientific "credibility," I mean to refer to the believability of claims and claims-makers. More specifically, credibility describes the capacity of claims-makers to enroll supporters behind their arguments, legitimate those arguments as authoritative knowledge, and present themselves as the sort of people who can voice the truth. Credibility is, of course, a quality that can be established in many different ways in different arenas. The credibility of a speaker can rest on academic degrees, "anointment" by the media, or the speaker's access to esoteric forms of communication; the credibility of any knowledge claim can depend on who advances it, how plausible it seems, or what sort of experimental evidence is invoked to support it. In the case of AIDS, credibility struggles have had distinctive characteristics, and the involvement of such a large cast of characters in the controversies has important implications for the study of credibility and knowledge-making.
From a scientific standpoint, the sheer complexity of AIDS has ensured the participation of scientists from a range of disciplines, all of them bringing their particular, often competing, claims to credibility. But AIDS has also been a politicized epidemic, and that political character has had consequences: it has resulted in multiplication of the successful pathways to the establishment of credibility and diversification of the personnel beyond the highly credentialed. The construction of facts in AIDS controversies has therefore been more complicated and the routes to closure more convoluted. Credibility struggles in the AIDS arena have been multilateral: they have involved an unusually wide range of players. And the interventions of laypeople in the proclamation and evaluation of scientific claims have helped shape what is believed to be known about AIDS—just as they have made problematic our understanding of who is a "layperson" and who is an "expert." At stake at every moment has been whether specific knowledge claims or spokespersons are credible. But at a deeper level, the stakes have involved the very mechanisms for the assessment of credibility: how are scientific claims adjudicated, and who gets to decide? As this study shows, debates within science are simultaneously debates about science and how it should be done—or who should be doing it.
The science of AIDS, therefore, cannot be analyzed "from the top
down." Rather, it demands attention to what Michel Foucault calls the "microphysics of power" in contemporary Western societies: the dispersal of fluxes of power throughout all the cracks and crevices of the social system; the omnipresence of resistance at every site; and the propagation of knowledge, practices, meanings, and identities out of the deployment of power. At the same time, my analysis suggests that—as Foucault would have it—the attempt to master specialized forms of knowledge can make people "objects" of that knowledge as well as "subjects." This is no romantic tale of resistance that privileges the "purity" of knowledge-seeking from below; rather, I argue that the cultures of experts significantly encroach upon and transform those of the laypeople who would engage with them. Nor am I interested in cheerleading, despite my strong sympathies for AIDS activism. What make the story of this engagement with biomedical expertise interesting and important are the ironies and tensions embedded in the process of forging novel scientific, political, and moral identities. This is a complicated history in which no party has had all the answers. All players have revised their claims and shifted their positions over time; all have had to wrestle with the unintended consequences of their own actions.
The immediate goal of my analysis is to shed light on the scientific and political dynamics of a health crisis of immense social import. With so many lives at stake, it behooves us to understand the configuration of interests, beliefs, and practices that determine how we come to believe what we think we know about the epidemic. However, I intend this analysis to do more. By emphasizing the role of laypeople in the production of biomedical knowledge, this study challenges approaches to the social study of science that tend to assume that knowledge-making is the province of a narrow circle of credentialed experts. And by exploring the vicissitudes of lay interventions in AIDS research, particularly on the part of grassroots activists, this study addresses some important and intractable questions about the politics of expertise and the place of science in the larger culture: What is the nature of the power wielded by experts? How does a society reconcile competing commitments to scientific autonomy and participatory democracy? What possibilities are there for laypeople to involve themselves meaningfully in the processes of "doing science," and what are the consequences of such incursions?
In the broadest sense, the analysis that follows reflects a historical and institutional approach to the study of controversies about knowledge.
It is concerned with the minute details of the construction of facts, but it assumes that the dynamics of fact-making become apparent only through a more thoroughgoing examination of power, meaning, and social organization. It focuses on the institutions of biomedicine and their particular organizational features and interests, but it argues that these institutions are constrained, and in some sense constituted, by their relations to other institutions and actors, notably forms of popular resistance. Because the pattern of these interrelationships in the case of AIDS has taken shape only gradually over the course of the epidemic, the body of my analysis assumes the form of narrative history. And because the actors and institutions in the story are so diverse, I have been deliberately eclectic in my selection of the theories and concepts that give the narrative its structure. Specifically, this book unites approaches from social studies of science, the sociology of medicine and the professions, and the sociology of social movements. In so doing, the book suggests directions for the development of a more comprehensive inquiry into the politics of knowledge in modern Western societies.
The Crisis of Credibility and the Rise of the AIDS Movement
The Politics of Trust and Distrust
Why is AIDS research so fraught with conflict and controversy? Why is this arena of fact-making so unusually public and porous? It has been suggested that a line of scientific research is likely to be controversial when any of a number of characteristics are present: if the research has direct applications, if it challenges or threatens the "natural order," if it is relevant to some politicized social issue, if sentiment has mobilized a related social movement, or if the research is in competition for scarce resources. Since AIDS research is marked by all five characteristics, one need not search hard for explanations of the volatility of the encounters surrounding it.
At the same time, both the controversies enveloping AIDS research and the invasion of the domain of science by outsiders presuppose a specific historical moment—one in which the authority of experts has extraordinary cultural centrality yet seems possessed of a curious fragility. Certainly there is no avoiding reliance on experts who are crucial transmitters and translators of technical knowledge to the lay
public. Increasingly, science is the resource called on to promote consensus, and experts are brought in to "settle" political and social controversies. Yet this "scientization of politics" simultaneously brings about a "politicization of science": the fact that political disputes tend to become technical disputes means that different parties rally their own experts to support them in a controversy, much like lawyers offering to the jury a parade of expert witnesses. Ironically, the outcome is that the very reliance on experts to adjudicate disputes tends to undercut the authority of expertise in general, "[highlighting] their fallibility [and demystifying] their special expertise."
Growing distrust of established experts is magnified by our culture's ambivalent attitude toward the institutions of science and their technological products. To be sure, science remains in relatively high esteem, especially considering the overall decline in confidence in many social institutions in the United States in recent decades. Yet science has been subject to attack from a range of points on the political spectrum, and the powers and prerogatives of the expert technocracy have been called into question. Postmodernist perspectives have unseated an Enlightenment confidence in the forward march of history, raising troubling questions about the role of science in a world stripped of the old warrants of reason, truth, and progress. And in a post-Hiroshima world, each passing technological disaster—DES, asbestos, Three Mile Island, Chernobyl, the space shuttle Challenger , the Exxon Valdez —heightens the perception that the fruits of scientific discoveries may be bitter as often as they are sweet. Overpromising by scientific experts, and claims of certainty that must later be watered down or retracted, are other instigators of "flip-flop thinking" on the part of the public—a tendency to alternate between mythologizing and demonizing scientists.
Medicine, as the most visible—and indeed most popular—form of applied science, has been a particularly important target of recent critiques of science. Doctors, in the words of Paul Starr, "serve as intermediaries between science and private experience." More profoundly than the abstract sciences, medicine seems to entrap its consumers in a fierce love-hate relationship, a tight nexus of need and fear. Over the course of the nineteenth and early twentieth centuries, doctors rose to positions of privilege in the United States, able to reap substantial social rewards on the basis of their authority. This authority, according to Starr, rested on the twin pillars of legitimacy and dependence: people believed that medical knowledge could help them,
and they felt that only doctors possessed that special knowledge and the skill to use it. The victory of medical authority therefore required the popular abandonment of an earlier, Jacksonian belief that the healing arts were accessible to "common sense" and the acknowledgment, on the contrary, of medicine's "legitimate complexity": no longer could everyone be his or her own physician.
In the 1950s, as Starr notes, "medical science epitomized the postwar vision of progress without conflict"—but this vision faltered in the 1960s and 1970s. Leftists advanced a thoroughgoing critique of the "medical-industrial complex": lurking behind the white coats and the reassuring smiles were profit lust and the dominance of large corporations. While conservatives and liberals argued that medical costs were out of control, feminists strove to take back control over their own bodies, criticizing medical science as a patriarchal institution. Revelations of past abuses in medical experimentation on human subjects led to an expanded emphasis on "informed consent," premised on the notion that the patient's trust in a physician is not automatically granted but "must be earned through conversation." At the same time, these revelations prompted the emergence of new institutions and bureaucratic structures designed to safeguard the interests of patients and research subjects vis-à-vis their own doctors.
The AIDS epidemic has magnified these various misgivings about doctors and researchers. Indeed, in the face of death and disease, popular ambivalence about biomedicine has undergone a peculiar amplification: distrust has been accentuated, but so has dependence. Despite their suspicion of expertise, people in advanced industrial societies typically expect doctors and scientists to protect them from illness and death. Yet, a decade and a half into the epidemic, researchers have not found an effective cure or vaccine. Scientists insist this is not surprising, given the complexity of AIDS and the "normal" rate of progress in biomedical investigations. Nevertheless, the failure of experts to solve the problem of AIDS quickly, as they were "supposed to," has heightened popular resentment and sparked a "credibility crisis." This in turn has opened up more space for dissident positions, both among scientists and doctors and within the lay public.
In theory, science is a quintessentially public enterprise. As Yaron Ezrahi notes, every scientific finding is legitimated by the notion that it is "grounded in impersonal non-private reproducible procedures through which it can be certified by anyone who cares to do so, provided he has the competence and the patience." In fact, as Steven
Shapin and Simon Schaffer have described it, the evolution of modern science is an ironic story of the construction of "a public space with restricted access." The consequence is that "a form of knowledge that is the most open in principle has become the most closed in practice." Scientists themselves are often anxious to police the boundaries of their professional domain and keep out unqualified interlopers or traffickers in "pseudoscience."
Yet the experts themselves ruefully acknowledge that the traditional conception of scientific autonomy is little in evidence in the case of AIDS. "We are no longer in that period of splendid isolation in science," the director of the National Institutes of Health (NIH), Dr. James B. Wyngaarden, remarked in 1989. "AIDS has politicized research, brought scientists face to face with many social issues and disaffected individuals, and gotten the attention of an activist community." If, as some have sought to argue, the "purity" of science is guaranteed by its insulation from external pressures, then AIDS research is a clear-cut case of impure science.
The Distinctive Character of the AIDS Movement
Perhaps the most striking feature on the landscape of AIDS politics is the development of an "AIDS movement" that is more than just a "disease constituency" pressuring the government for more funding, but is in fact an alternative basis of expertise. The members of this movement are not the first laypeople to put forward claims to speak credibly on biomedical matters. But this is indeed the first social movement in the United States to accomplish the large-scale conversion of disease "victims" into activist-experts. In this sense, the AIDS movement stands alone, even as it begins to serve as a model for others.
The movement is broad based and diverse, ranging from grassroots activists and advocacy organizations to health educators, journalists, writers, and service providers; it cuts across the various communities and constituencies affected by the AIDS epidemic, and includes gays and lesbians, people with hemophilia, injection drug users, and members of many hard-hit African-American and Latino communities. Over the course of the epidemic, members of the AIDS movement have taught themselves the details of virology, immunology, and epidemiology. They have criticized scientific research that seemed to be fueled
by antigay assumptions, defended speculation about alternative theories of AIDS causation, asserted that community-based AIDS organizations have the expertise to define public health constructs such as "safe sex," demanded scientific investigation of potentially useful treatments, established a grassroots base of knowledge about treatments, conducted their own "underground" drug trials, and criticized the methodologies employed in AIDS clinical research. They have established their credibility as people who might legitimately speak in the language of medical science, in particular with regard to the design, conduct, and interpretation of clinical trials used to test the safety and efficacy of AIDS drugs.
Medicine is, to be sure, a more likely target of lay intervention than other, more private and remote domains of scientific practice. On a national level, biomedical politics constitute "one arena of science-government relations" where interest groups flourish and "where ordinary people get some of what they want." On a more intimate scale, the health of one's body is an issue of considerable salience to most people in a way that, say, astrophysics or oceanography typically is not. And individuals have much easier access to at least the frontline institutions of biomedicine—hospitals, clinics, and so on—than to the inner sanctums of science. Indeed, there is a substantial, if recent, history of political challenges to the doctor-patient relationship and of the emergence of the "educated patient"—a history that prefigures the claims-making projects of the AIDS movement. Patients with chronic illnesses such as diabetes, multiple sclerosis, and arthritis may be particularly inclined to become expert in therapeutic options and even the theories about underlying disease mechanisms.
Of course, the expertise of the individual educated patient is not likely to "travel" far beyond a restricted domain. But as patients begin to organize and exchange information, the breadth and durability of their lay expertise is enhanced. Such organization can take a variety of forms. Creation of patient self-help groups—a rapidly proliferating phenomenon particularly in the United States—is an important step in the development of an organized base of alternative expertise. A different kind of example is the attempt made by groups of cancer patients in the 1970s to promote access to unapproved therapies, such as use of laetrile; their efforts resulted in public hearings and Supreme Court rulings. Perhaps most consequential for the cultural redefinition of relations between medical experts and lay consumers was the emergence in the 1970s of the feminist health movement. Linking a
systematic critique of patriarchal institutions to a concrete praxis of self-help, the feminist health movement sought, in Sheryl Ruzek's words, to "[reduce] the knowledge differential between patient and practitioner, [challenge] the license and mandate of physicians to provide certain services, [reduce] professionals' control and monopoly over related necessary goods and services,… and [transform] the clientele from an aggregate into a collectivity."
However, neither self-help groups nor cancer activists nor even the feminist health movement has had much success in extending its critique of medical practice into an engagement with the methodologies of biomedical research . Examples of this sort of lay intervention are few and far between, although analysts have described some intriguing parallel cases. For example, in the late 1980s the RSI (Repetitive Strain Injury) Association in the United Kingdom not only produced patients who were "better informed about the disorder than their treating physician" but also played a role in the very conceptualization of this new illness within the biomedical establishment. The German Retinitis Pigmentosa Society, founded in 1977, encouraged scientists to pursue specific lines of research that otherwise might not have been investigated, judging from the absence of such research in other European countries. Yet even these examples pale when compared to the breadth, depth, and, certainly, the militance of the AIDS movement.
What gives AIDS activism its distinctive character? To some extent, the unique features of the clinical picture of AIDS have shaped the development of an activist response. First, AIDS has affected many young people in their twenties and thirties who are little inclined simply to lie down and wait to die. Second, those who test positive on HIV antibody tests (available since 1985) are likely to be told by medical authorities to expect some number of years of outwardly normal health before the onset of symptoms—years in which activism is not only feasible from a physical standpoint but may seem eminently practical from a political and psychological standpoint. Indeed, AIDS activism, as opposed to many other activist projects, holds out the promise of some profoundly tangible immediate rewards, most notably access to potentially life-prolonging medications.
Even more fundamental, the distinctive social epidemiology of AIDS has shaped the character of the public engagement with science. Unlike many other diseases, which affect the population in a relatively random fashion, AIDS has had a strikingly uneven impact, being disproportionately
prevalent within specific groups, subcultures, and communities. This may seem an obvious point, yet its significance cannot be overemphasized. From the start—and up to the present day—AIDS has been understood both in epidemiological and lay parlance as a disease of certain already-constituted social groups distinguished by their "lifestyle," their social location, or both. The result is that the very meaning of AIDS has been bound up with the cultural understanding of what such groups are like, while the very identity of the groups has been shaped by the perception of 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 drug use, and if the groups affected were not already stigmatized on other counts, such linkages between identity and illness might be of little consequence. As it is, the AIDS epidemic has engendered fear and prejudice and has sparked the necessity, on a massive scale, for what Erving Goffman has called "the management of spoiled identity."
Gay men, the group whose identity has been most thoroughly shaped by the confrontation and association with the epidemic, entered the era of AIDS equipped with a whole set of resources crucial for engagement in the struggle over social goods and social meanings. In the recent past, gays and lesbians in the United States had achieved a singular (if incomplete) redefinition of social status, challenging the dominant conceptions of homosexuality as illness or immorality, and reconstituting themselves as a legitimate "interest group" pursuing civil rights and civil liberties. With the limited successes of the "homophile" movement of the 1950s and 1960s and the more substantial impact of the gay liberation and gay rights movements of the 1970s, gay men and lesbians challenged social norms, constructed organizations and institutions, and established substantial and internally diffenentiated subcultures in urban centers throughout the United States. By the time the AIDS epidemic was recognized in 1981, the gay movement was deeply engaged in projects of "identity politics"—the linkage of tangible political goals to the elaboration and assertion of an affirmative group identity. A threat to identity, therefore, was a threat that the movement could easily understand and one against which it was quick to mobilize.
An engagement with the medical profession was not entirely foreign to this movement either, since a specific accomplishment of gay liberation had been to "demedicalize" homosexuality by removing it from the official list of psychiatric illnesses. Indeed, while gay activists
on the margins of U.S. society had developed an oppositional stance regarding many social institutions, they had for some time been particularly inclined to view medical authorities with suspicion. And many lesbians (and heterosexual women) who would become active in the AIDS movement were schooled in the tenets of the feminist health movement of the 1970s, which likewise advocated skepticism toward medical claims and an insistence upon the patient's decision-making autonomy.
Thus, in its emergence and mobilization, the AIDS movement was a beneficiary of "social movement spillover": it was built on the foundations of other movements and borrowed from their particular strengths and inclinations. Most consequential was the link to the lesbian and gay movement of the 1970s and early 1980s: It mattered that gay communities had preexisting organizations that could mobilize to meet a new threat; these community organizations and institutions also provided settings for the face-to-face interactions that are so important in drawing individuals into activism. It mattered, too, that these communities included (and in fact were dominated by) white, middle-class men with a degree of political clout and fund-raising capacity unusual for an oppressed group. And it was crucial that gay communities possessed a relatively high degree of "cultural capital"—that they had cultivated a disposition for appropriating knowledge and culture. Within these communities are many people who are professionals, artists, and intellectuals of one sort or another—not to mention many doctors, scientists, educators, nurses, and other health professionals. On one hand, this has provided the AIDS movement with an unusual capacity to develop its own "organic intellectuals" and contest the mainstream experts on their own ground. On the other hand, it has afforded important sources of intermediation and communication between "experts" and "the public."
This particular historical conjuncture has given birth to a movement that is uniquely inclined and empowered to challenge the scientific and medical establishments. In some respects, the AIDS movement resembles other social movements that have challenged scientific authorities in the recent past—movements that have focused on issues as diverse as evolutionary theory, IQ testing, nuclear power, fetal tissue research, and recombinant DNA research. However, while there often are similarities among these oppositional groups, even across the political spectrum, the differences in how they approach science are striking. Some movements are essentially negative, confining themselves
to the politics of distrust: "We don't believe you when you claim that fluoridation is harmless." Others ultimately just want to show that science and truth are on their side. They seek to acquire for themselves the cachet of scientific authority by finding the expert who will validate their given political stance: "Low level radiation is dangerous"; "the greenhouse effect isn't a serious threat." Members of a third category, typified by some advocates of mysticism and "New Age" philosophies, reject outright the scientific way of knowing and advance their own claims to expertise from some wholly different epistemological standpoint.
Perhaps the most interesting of the social movements that position themselves in relation to science are those which try to stake out some ground on the scientists' own terrain. These activists wrangle with scientists on issues of truth and method. They seek not only to reform science by exerting pressure from the outside but also to perform science by locating themselves on the inside. They question not just the uses of science, not just the control over science, but sometimes even the very contents of science and the processes by which it is produced. Most fundamentally, they claim to speak credibly as experts in their own right—as people who know about things scientific and who can partake of this special and powerful discourse of truth. Most intriguingly, they seek to change the ground rules about how the game of science is played.
The AIDS movement can best be compared with the relatively short list of movements that neither simply enlist experts nor attack them but, rather, undergo the process of "expertification." A participant in such a movement learns the relevant knowledge base so as to become a sort of expert; more broadly, such participants transform the very mechanisms by which expertise is socially constituted and recognized. Phil Brown, for example, has studied the engagement of citizens of Woburn, Massachusetts, in the determination of health risks from toxic waste. Brown characterizes their efforts as "popular epidemiology," in which "laypersons gather scientific data and other information and also direct and marshal the knowledge and resources of experts in order to understand the epidemiology of disease." Such movements, as Susan Cozzens and Edward Woodhouse note, are not "anti-science" but "pro-knowledge": they seek "to re-value forms of knowledge that professional science has excluded, rather than to devalue scientific knowledge itself."
AIDS activism is distinctive, however, in the duration of intense
working relationships between the movement and the research community. And AIDS activism is unusual in the extent to which activists necessarily depend on the energy and goodwill of their own interlocutors. Antinuclear activists who master the technical jargon of nuclear engineers have the luxury of treating those experts as the enemy. AIDS activists, by contrast, have no illusions about their ultimate dependence on the biomedical enterprise for the discovery and testing of treatments. Although some community spokespeople endorse New Age therapeutic methods ranging from "creative visualization" to healing crystals, most activists accept that a solution to the deadly AIDS epidemic will arrive via some variety of scientific process, if it arrives at all. They are caught, as Ronald Bayer puts it, "between the specter and the promise of medicine."
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. 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." In practice, a range of theories has been offered as to how the credibility of knowledge claims is secured. 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.
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. 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." 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." 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.
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.
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." 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. 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. Like other professional groups, scientists frequently participate in shoring up their legitimacy, including engaging in public relations work and attempts to manage the presentation of scientific findings in the mass media. 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. 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.'"
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." 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. 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. 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. 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 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.
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. 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. 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." 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.
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. 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.'" 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, the antipathy of groups such as the animal rights movement toward the scientific enterprise, the formation of activist groups or advocacy movements by scientists or professionals themselves, and even the tendency of delegitimated clusters of scientists to work in ways that resemble social movements.
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. 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, how they construct collective identities, how they "frame" social issues and represent reality —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." 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. 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.
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. 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," 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.
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.
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." 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." 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. "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.'"
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. 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.
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." 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. 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."
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. 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…." 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…."
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. 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. Such developments pose an important challenge to the conventional "top-down" models of how expert knowledge is disseminated. 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."
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." 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. 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. 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. 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.
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?
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." 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. 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"). 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.
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. 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." 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."
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. 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…." Credibility, as I use the term, rests on the dual supports of power and trust. 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, …")? 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?
The Plan of the Book
Two sets of controversies demonstrate with particular force the centrality of credibility struggles in the constitution of scientific knowledge about AIDS: debates about the causes of the syndrome and debates about treatments . The analyses of these two controversies occupy the first and second halves of this book, respectively. These debates strike at some of the central questions that confront biomedical science: What is AIDS and what causes it? How can its effects be curtailed?
Part One: The Politics of Causation
Who could doubt that HIV, the human immunodeficiency virus, causes AIDS? That proposition has been the accepted scientific wisdom since the mid-1980s, after several groups of researchers reported finding a previously unknown virus in the blood of AIDS patients. It is a conclusion endorsed by preeminent virologists, immunologists, epidemiologists, and clinicians; by the World Health Organization and the Centers for Disease Control and Prevention (CDC); and by prominent AIDS service and advocacy organizations. In the mainstream media, HIV is casually referred to as the "AIDS virus"; among insiders, AIDS is increasingly understood as simply the end stage of "HIV disease." The claim that HIV is the etiological agent in the Acquired Immunodeficiency Syndrome is the guiding assumption behind billion-dollar programs for HIV antibody testing, antiviral drug development and treatment, and vaccine research around the world. It is the cornerstone of "what science knows about AIDS."
Yet the search for the cause of AIDS took many twists and turns before settling on HIV. Indeed, the notion that AIDS might be caused by a previously unknown virus was initially a relatively unpopular one. Beginning from a zero point of near-total uncertainty, competing groups of scientific claims-makers, under the watchful gaze of interested segments of the public who sought to establish "ownership" over the epidemic, advanced various hypotheses. Then, between 1984 and 1986, a bandwagon formed behind the proposal that a particular virus, eventually named HIV, was the causal agent.
Nevertheless, in the late 1980s and early 1990s, some years after the discovery of HIV and the large-scale implementation of social policy based on it, the markers of controversy abounded. Symptomatic were debates about "cofactors" needed to cause disease, investigations into the mysteries of "pathogenesis" (Just how does HIV cause disease?), and scares about cases of an "AIDS-like" illness in HIV-negative people. Most astounding of all have been the claims of Peter Duesberg, a molecular biologist at the University of California at Berkeley and a member of the elite National Academy of Sciences. Beginning in 1987 in an article in Cancer Research and subsequently in articles in publications such as Science and the Proceedings of the National Academy of Sciences , Duesberg has maintained that HIV is a harmless passenger in the AIDS epidemic, "just the most common among the occupational viral infections of AIDS patients and those at risk for AIDS, rather than the cause of AIDS." He argues that there is no solid evidence establishing a causal role for the virus and, furthermore, that a retrovirus such as HIV simply cannot cause a syndrome like AIDS. Instead, Duesberg's current alternative hypothesis is that "the American AIDS epidemic is a subset of the drug epidemic," attributable primarily to long-term consumption of recreational drugs and secondarily to what Duesberg calls "AIDS by prescription"—the toxic effects of the medication azidothymidine (AZT), widely prescribed to fight HIV infection.
Duesberg is only one of a number of researchers, doctors, and activists who have cast doubt on the "HIV hypothesis," but he has attracted by far the most attention. Duesberg's claims have prompted dozens of articles and communications in scientific journals and several hundred articles and letters in the mainstream English-language press. In 1994, Science , one of the most important general science journals in the world, devoted eight pages to the "Duesberg phenomenon." The story has found its way into Naturwissenschaften and the Gaceta Médica de México; the Los Angeles Times , the New York Times , and the Times of London; National Public Radio and Penthouse;[ 132] the position papers of an AIDS advocacy organization and the columns of a pop music magazine; and perhaps every gay and lesbian news source in the United States. Reporters are quick to stress Duesberg's impressive credentials. He is frequently cast as a "heretic" who, like Galileo, has been excommunicated by dogmatic proponents of "orthodoxy" less interested in truth than in their hold on the faithful. And reporters are often quick to mention that Duesberg has declared himself in principle "quite happy to [be]
publicly injected with HIV." Many scientists who think Duesberg is dead wrong are made apoplectic by the mention of his name. "I'm so tired of hearing the Peter Duesberg crap about HIV," said Donald Francis, a prominent AIDS researcher formerly with the CDC, to an audience of one thousand at a 1992 public forum on AIDS in San Francisco. "News reporters looking for an AIDS angle should look for another story…. The disease is caused by the virus, dammit, and the press should understand that."
To describe the construction of facts such as "HIV causes AIDS," sociologists of scientific knowledge have adopted the phrase "black box." As Bruno Latour explains, the concept is borrowed from cybernetics, where black boxes are used in diagrams as a quick way of alluding to some complex process or piece of machinery: if it's not necessary to get into the details, one just draws the box and shows the input and the output. Then no one has to worry about what goes on inside the box itself, and the nonexpert may never even realize just how messy the inside really is. Scientific facts are similar: masked beneath their hard exterior is an entire social history of actions and decisions, experiments and arguments, claims and counterclaims—often enough, a disorderly history of contingency, controversy, and uncertainty.
Scientists strive to "close" black boxes: they take observations ("The radioactive isotope count that indicates the presence of reverse transcriptase, an enzyme associated with retroviruses, rises over time in specially prepared lymph tissue from a person with an illness believed to be AIDS-related"), present them as discoveries ("A novel human retrovirus has been grown in T-lymphocytes of AIDS patients"), and turn them into claims ("The probable cause of AIDS has been found") which are accepted by others ("HIV, the putative cause of AIDS,…") and may eventually become facts ("HIV, the virus that causes AIDS,…") and, finally, common knowledge , too obvious even to merit a footnote. Fact-making—the process of closing a black box—is successful when contingency is forgotten, controversy is smoothed over, and uncertainty is bracketed. Before a black box has been closed, it remains possible to glimpse human actors performing various kinds of work—examining and interpreting, inventing and guessing, persuading and debating. Once the fact-making process is complete and the relevant controversies are closed, human agency fades from view; and the farther one is from the research front, the harder it is to catch glimpses of underlying uncertainties. It then becomes difficult to ask, Was the examination accurate? Was the interpretation
defensible? Was the persuasion logical? Those who want to challenge a claim that has been accepted as fact must effectively "reopen" the black box.
What are the dynamics of fact making when science is closely scrutinized by attentive spectators? What are the processes by which black boxes are closed and reopened when scientific arguments become the stuff of news reports and street conversations? There are examples of important controversies in science—the debate over continental drift is one —that barely get any airplay in the "outside" world. AIDS is something else again. With millions of people around the world believed to be infected with HIV, the human stake in the causation controversy is gigantic, immediate, and inescapable. It should therefore come as no surprise that the cast of characters in AIDS debates is diverse. A full-fledged inquiry into the controversy immediately bursts us out of the "scientific field" narrowly construed. It forces an examination of the ensemble of social actors, with varying and conflicting social interests, who at different points have struggled to assert credible knowledge about the epidemic or to assert their capability to weigh and evaluate such knowledge.
At a different level, the causation controversy reflects a struggle for "ownership of" and "democracy within" science. An agenda has emerged, well expressed in the words of writer Jad Adams, one of the "HIV dissidents" and author of AIDS: The HIV Myth: "Ultimately, expert advice must be evaluated by the people who are not experts—politicians, journalists, and the public. This is part of democratic life and a scientist has no more right to exclusion from public scrutiny than a treasury official." In the intervention of laypeople in debates about the causes of AIDS, claims about causes are interwoven with claims about the very right to intervene. It makes sense that the opponents of the orthodox position on causation so frequently take aim at what they call the premature "rush to judgment" in 1984 on the question of causation: from their perspective, this moment represented the stifling of democratic openness of opinion and the authoritarian imposition of closure. In many ways the debate has become a debate about closure —that is, a debate about when and how scientific controversies end. But concerns about closure in this case break down into a number of important dimensions: epistemological (When is causation proven?), methodological (How should rival theories be weighed and compared?), empirical (Was closure arrived at too early? What conclusions did the evidence permit in 1984 and what conclusions are
reasonable today?), and most notably, political (Who decides? Which social actors are qualified or entitled to participate in the process of establishing the scientific knowledge about AIDS?). In other words, the controversies about what causes AIDS are simultaneously controversies about scientific controversies and how they should be adjudicated—controversies about power and responsibility, about expertise and the right to speak. As frames of knowledge and belief about AIDS have become fixed in place, a range of social actors have engaged in credibility struggles to defend, refine, subvert, overturn, or reconstruct those frames.
Conceived as a series of multilateral credibility struggles, the controversy surrounding the causation of AIDS raises a number of important questions that I consider in the chapters that make up part one:
How did the hypothesis that was initially considered relatively unlikely—that AIDS is caused by a previously unknown virus—come to supplant more popular alternatives?
What were the processes by which the HIV hypothesis, once formulated, became "black-boxed" and achieved the status of fact—among doctors and scientists, in the mass media, in gay communities, and in the AIDS movement? To what extent was there dissent, and how was it manifested?
How is it that Duesberg, initially presenting views that had minimal credibility among established AIDS researchers and mainstream AIDS organizations, has been able to attract allies and adherents not just among sectors of the AIDS movement but, eventually, within legitimate scientific circles as well?
How has Duesberg been able to accomplish this when others with somewhat similar views have been marginalized?
My reconstruction of the history of claims-making necessarily ranges widely. It is not just that the controversy extends across a range of scientific disciplines—virology, epidemiology, immunology, molecular biology, pharmacology, toxicology, and clinical medicine. The controversy also spins off into a series of more general debates about the nature of disease and the methods of scientific reasoning: Do diseases typically have a single cause or multiple causes? Are established rules of scientific proof inviolable, or are they subject to revision as scientific knowledge changes and technologies improve? When anomalies are found that appear to falsify an existing hypothesis, when should the
hypothesis be scrapped and when is it proper scientific procedure to work with the hypothesis, tinkering with it so that it can account for the anomalies? Does normal, peer-reviewed "establishment science" produce the best results in the end, or do the truly revolutionary findings come from the mavericks and iconoclasts who challenge, or work outside of, the system?
And finally, as the controversy has expanded from one social arena to the next, it has never been articulated in a vacuum, separate from other social concerns. On the contrary, a variety of apparently tangential beliefs and values have spilled over into (indeed, partially constitute) the AIDS etiology debates. These beliefs and values include divergent attitudes toward homosexuality, promiscuity, and drug use; inferences that link the causes or origins of a disease with theories of social blame; and assumptions about whether illnesses are attributable primarily to microbes, lifestyles, or societies. In short, the AIDS causation controversy is inexplicable outside of the larger context of how AIDS has been constructed as a social problem against the backdrop of contested attitudes about scientific medicine.
Part Two: The Politics of Treatment
Find the cause, then find the cure: this is the mission of biomedicine in a nutshell. But how does it work in practice? What are the social processes that bring a therapy from laboratory bench to medicine cabinet? Who decides what treatment strategies to pursue or how to develop and test medications? Exactly what does it mean to say that a treatment "works"? Like debates about the causes of AIDS, claims and counterclaims about treatments involve fervent struggles for credibility—struggles waged in the shadow of towering uncertainty and driven by urgent need. Progress, and power, derive from the ability to submit credible answers—to push back the bounds of uncertainty, to offer something that "helps," to voice what is "known."
The actors in this drama are as varied as the interests that motivate them and the values that animate them—the researchers hoping to hit on breakthroughs in the basic or applied sciences of AIDS research; the pharmaceutical and biotechnology companies whose stock values might fluctuate by millions of dollars, depending on the latest reports about the successes or failures of their products; the medical professionals who must translate inconclusive and contradictory research findings into workable, day-to-day clinical judgments; the regulatory agencies and advisory bodies that serve as "gatekeepers," ruling on
the safety and efficacy of new therapies; the patients who consume the drugs and populate the clinical trials; the reporters and journalists who interpret scientific research findings to various segments of the public; and, of course, the activists who police the whole process and offer their own interpretations of the methods and the outcomes. In the late 1980s, "treatment activism" emerged as the forward wedge of the multifocal AIDS activist movement in the United States, widely hailed—and sometimes damned—for its ingenuity, brashness, aptitude, and muscle.
"There's no doubt that they've had an enormous effect," commented Dr. Stephen Joseph in 1990, soon after leaving the post of New York City health commissioner. "We've basically changed the way we make drugs available in the last year." While the activist impact on the regulatory procedures of the Food and Drug Administration (FDA) has been widely publicized, this remains just one of many items on treatment activists' agenda for the reformation of biomedical science. As the National Research Council of the National Academy of Sciences put it (in a 1993 report otherwise noteworthy for its skepticism about the transformative effects of the AIDS epidemic on U.S. society): "Every aspect of the process by which new pharmacologic agents [are] identified, evaluated, regulated, and allocated [has been] tested by the exigencies of [this] epidemic disease. Questions basic to the epistemologic foundations of biomedicine—questions of verifiability, reproducibility, proof, variability, safety, and efficacy—[have all been] subject to debate and reevaluation."
Treatment activists have been pivotal in this rethinking of biomedical truth-making. They have challenged the formal procedures by which clinical drug trials are designed, conducted, and interpreted; confronted the vested interests of the pharmaceutical companies and the research establishment; demanded rapid access to scientific data; insisted on their right to assign priorities in AIDS research; and even organized research on their own, with the cooperation of allied professionals. Starting out on the margins of the system, treatment activists have pushed their way inside, taking their seats at the table of power. Activists now sit as full voting members of the NIH committees that oversee AIDS drug development, as invited participants at the FDA advisory committee meetings where drugs are considered for approval, as members of federal review panels that consider proposals for research grants, and, at local levels, as representatives on the review boards that approve clinical research at hospitals and academic centers.
In addition to moving inward, they have pursued an evolution "backward," as treatment activists themselves have noted. Beginning with a focus on the end stage of the drug development process, they have worked their way back toward earlier and earlier moments—"from drug approval at the regulatory level of [the FDA], to expanded access for drugs still under study …, to the design and conduct of the controlled clinical trials themselves. …" Most recently, several prominent treatment groups have pushed back even further, to promote, monitor, and criticize the directions of basic AIDS research—the "pure science" investigations in immunology, virology, and molecular biology that are considered the necessary prelude to the applied work of developing and testing specific therapies.
The vigorous participation of self-educated activists—and more broadly, the rise of knowledge-empowered communities that monitor the course of biomedical research—has had momentous effects on the development of AIDS treatments. These developments have transformed the procedures by which drugs are tested, the ways in which test results are interpreted, and the processes by which those interpretations are then used in the licensing of drugs for sale.
The Conduct of Clinical Research.
In the postwar era, the assessment of therapies has been linked to the techniques of the randomized clinical trial. Such trials provide crucial "hard data" about treatment effects, but also obscure political decisions about how to measure the risks and benefits of a drug, cloaking them in the aura and mystery of objective science. Widely considered the pathway to objectivity in modern biomedical research, clinical trial results in practice can be subject to enormous amounts of interpretative flexibility. Precisely because the stakes are often high—both in human lives and in stock market values—deciphering clinical trial findings can prove not only a contentious process, but also a highly public one.
Clinical trials are also a form of experimentation that requires the consistent and persistent cooperation of tens, hundreds, or thousands of human beings—"subjects," in both senses of the word, who must ingest substances on schedule, present their bodies on a regular basis for invasive laboratory procedures, and otherwise play by the rules, known more formally as the study protocols. From the standpoint of the researcher, ensuring the cooperation of research subjects is a complicated endeavor because these "bodies" talk back: subjects participate or don't participate and comply with the study protocols or
not, depending on their own perceptions of what works and what doesn't, how desperate their own health situation is, and what options are open to them.
It has recently been argued that the history of clinical trials needs to be rewritten to, in effect, "bring the patient back in"—to demonstrate how the capacity to construct knowledge through this particular technique is both enabled and constrained by the research subjects and the resistance they present to the epistemic goals of the clinical investigators. In fact, the AIDS epidemic should be considered a decisive turning point in this revisionist history. AIDS trials are distinctive not only because of the militancy of many of the patients, but because their representatives have mobilized to develop effective social movement organizations that evaluate knowledge claims, disseminate information, and insert laypeople into the process of knowledge construction. The activist representatives of AIDS patients not only facilitate the flow of information to and among them, but also press demands about what should be studied in the first place and how the research protocols should be worded. Highly technical details such as the entry requirements for trials, the types of controls employed, and the endpoints to be used in studies have all been the subject of vociferous debate. Such developments pose substantial complications for the "politics of therapeutic evaluation."
The Interpretation of Studies.
"You can't reproduce the real world in a … clinical study," acknowledges Dr. Douglas Richman, a prominent AIDS researcher at the University of California at San Diego. "The hope is that you can define things in such a way that you can get some interpretable data in which the bias is sufficiently limited [so] that it's meaningful and it's applicable to other situations. …" As Steven Shapin expresses it, any laboratory experiment has credibility only insofar as it is taken to "stand for" some actual conditions in the "real world": for example, "when Robert Boyle put a barometer in the air-pump and then exhausted the air, its behavior was meant to stand for what would happen were one to walk a barometer up to the top of the atmosphere." But the extent to which the experiment adequately represents reality is always subject to negotiation—and open to deconstruction. The effect of activist interventions into questions of research design and interpretation has been precisely to "denaturalize" clinical trials—to call the objectivity of the methods into question, to reveal their "artifactual and conventional" status, and to make the results of given trials more open to question.
Few people, including practicing physicians and many academic researchers who conduct clinical trials, can entirely follow all the statistical arguments that constitute the formal evidence invoked in favor of, or in opposition to, a given treatment. Most players therefore become adept at reading the signposts: Where was the study published? Who conducted it? Was it peer reviewed? Is anyone criticizing it? Are there any methodological flaws or "gray areas" that have been pointed out? Has the FDA acted on it? Has the NIH issued treatment guidelines? Do I know of doctors who are prescribing this drug? How are their patients doing? The social power of a study depends considerably on these markers of credibility, and their absence can cause problems for the acceptance of the study's findings.
Into this complex field of claims and counterclaims, markers and precedents, signals and responses, enter the AIDS activists. Activist participation has done nothing less than change the ground rules for the social construction of belief —the varied processes by which different groups and institutions in society come to believe that a given treatment is "promising" or "disappointing," "effective" or "junk," "state of the art" or "passé." Activists have become proficient at interpreting the credibility of AIDS trials, and they have educated their base communities about how to scrutinize newspaper reports of "miracle cures" and journal articles about the "definitive" clinical trial. Activists in turn have promoted their own assessments: that study makes sense; this drug seems to be working. They have argued for rethinking the risk-benefit calculus for life-threatening illnesses, and they have pushed for the rights of patients to accept greater risk in deciding whether to try experimental treatments.
The Politics of Risk and Regulation.
In a world that depends heavily on specialized expertise, decisions about risks increasingly are adjudicated by impersonal organizations and institutions. But particularly in cases of controversy and politicization, it becomes harder to "contain" such decisions within normal organizational routines. Thus the regulatory hearings that consider evidence from clinical trials in order to license pharmaceutical products for sale are often heated sites for the negotiation of credibility, risk, and trust. "Regulatory science," as Sheila Jasanoff calls it in her study of agencies such as the FDA and the Environmental Protection Agency, is indeed a legitimate variety of scientific enterprise, but it is a very particular variety—and at least in the United States, a particularly adversarial one at that. Regulatory science differs from research science in its goals, its
institutional locus, its formal products, its time frame, and its accountability.
A distinctive difficulty of regulatory science is that everyone involved in making assessments speaks a somewhat different language. The statistician wants to know if the "null hypothesis" of "no treatment effect" has been disconfirmed to a sufficient degree of statistical certainty. The clinician wants to know if her patients' symptoms show improvement. The pharmaceutical manufacturer is concerned with liability and profit margins. And the regulatory official assesses "safety and efficacy" by measuring compliance with statutory and administrative requirements. Patients and their activist representatives want to know if a drug "works": at times they may demand certainty from institutions ill-equipped to provide it; at other moments they may insist on their willingness—indeed, their right —to freely assume the risks of uncertainty and ingest substances about which researchers and regulators have doubts. Should the social priority be "access" or "answers"—rapid approval of experimental therapies or careful consideration of the accumulation of evidence? Are these goals in conflict or can they be advanced simultaneously? Regulators, researchers, doctors, patients, and activists have all held different opinions on these questions—opinions that in some cases have shifted markedly over the course of the past decade.
A small number of drugs, many of them chemical cousins of AZT, have been licensed in the United States as antiviral agents effective against HIV infection or AIDS. (Other drugs have been licensed to fight opportunistic infections and neoplasms that are characteristic of AIDS—the infections and cancers that afflict people with weakened immune systems.) It is universally agreed that none of these drugs is a cure for AIDS. Beyond that, the drugs are shrouded in controversy, and AZT, the drug most widely prescribed throughout the late 1980s and early to mid-1990s, has seen its star rise and then fall. What is "known" and "believed" about these drugs, by whom, and where?
The answers to these questions demonstrate how certainty and uncertainty about treatments—much like beliefs about causation—emerge out of multilateral struggles for credibility. I analyze these struggles by tracing the first decade of AIDS antiviral drug development, from 1984 to 1995, and emphasizing the following issues:
What were the approaches to treatment that emerged upon the "black-boxing" of the HIV hypothesis? How have treatment strategies
changed in relation to advances in virology and immunology?
How did AZT become credible as the treatment of choice for AIDS and for lesser HIV infection? How did a bandwagon form behind the promotion of this drug? Why was the drug recommended for many asymptomatic (outwardly healthy) HIV-infected people in 1989, and why did its value for those same patients come into doubt by 1993? Who has supported AZT, who has questioned it, who has labeled it a "poison," and why?
How did AZT's "cousins" ddI, ddC, d4T, and 3TC become the beneficiaries of novel accelerated mechanisms of drug testing and licensing? What is known about the long-term efficacy of these drugs and about newer, perhaps more promising drugs such as the "protease inhibitors"?
What impact has the "democratization of research" had on the assessment of credibility and the construction of belief about drugs? Specifically, what have been the consequences of lay participation on NIH committees and on community advisory boards for clinical trials? How has the development of a sophisticated activist press that evaluates treatments and regulatory policies affected the research and regulatory processes?
How have activists constructed their credibility as scientific actors in this domain? How have they pressed their critiques of the methods employed in the design and interpretation of clinical trials? How has the engagement with clinical and basic science affected the organization and identity of the movement?
In the debates surrounding treatments, just as in those concerning causation, we see participants engaged in disputes about the meaning of evidence that simultaneously are disputes about the standards of evidence—about what counts as proof and, crucially, who decides. In this respect, there is an underlying commonality between part one and part two of this book. (Indeed, many of the same players surface in both). At the same time, the causation and treatment controversies are in certain respects quite different, and they reveal distinct mechanisms for the establishment of credibility in science. In both cases, the AIDS movement, broadly construed, has played an important and visible role. But in the causation controversies, the most publicized challenges to mainstream views have come from highly credentialed researchers, and representatives of the AIDS movement have enjoyed more success
in assessing the claims of others than in asserting their own. By contrast, the crucial voices of heterodoxy in the treatment controversies have been those of lay activists.
Given the nature of scientific research, there is a certain logic to this difference. The investigation of the etiology and pathogenesis of illness is closer to the realm of "pure science"—the heavily-defended "core" of scientific practice to which few outsiders can successfully gain entry. By contrast, the investigation of treatments—and in particular the establishment of treatment efficacy through the mechanism of the clinical trial—is in part an "applied" science, located more on the "periphery" of scientific practice. It is more easily accessible to members of the patient community, whose participation in the process is indeed essential and who therefore have an immediate claim to a stake in the process and a basis for the development and assertion of their own expertise. A comparison of AIDS causation controversies and treatment controversies is therefore instructive, for it demonstrates how different kinds of scientific debates generate different possibilities for the manufacture of scientific expertise and credibility.
Conceptualizing Aids: Some Intellectual Debts
Although books and articles analyzing the AIDS epidemic are legion, few have studied the way that scientific knowledge about AIDS is constructed through controversy and claims-making. Indeed, some of the most well-known discussions of the social dimensions of the epidemic, such as Randy Shilts's And the Band Played On , obscure as much as they clarify about the construction of knowledge regarding AIDS. Though moving, Shilt's book offers a teleological account of science: the "certainties" of 1987 are projected backward onto past moments in the epidemic, and those who, at the time, endorsed arguments that would later become authoritative are labeled heroes, while those with views that were destined to fall out of favor are characterized as wrongheaded and even dangerous. Though often damning of the conduct of science in the United States, Shilts never moves beyond the classic liberal position that the institutions of science would function just fine if only "politics" (for example, the anti-gay attitudes of a Republican administration) and personal motivations (such as scientific ambition) could be kept from interfering. Such
views are in sharp contrast to theoretical perspective that portray science as normally and inevitably infused with politics of various kinds—perspectives that suggest we analyze knowledge in relation to interests, strategies, and mechanisms of claims-making.
Other mainstream accounts from a traditional science journalism perspective seem to miss much of what is most distinctive about the case of AIDS. Steve Connor and Sharon Kingman's The Search for the Virus , for example, is full of useful information about the scientific arguments and hypotheses advanced over time but has nothing to say about anything happening outside of the scientific field narrowly construed. Bibliometric analyses of AIDS publications are likewise helpful in understanding shifts in emphases over time, while Henry Small and Edwin Greenlee's "co-citation" study of AIDS research shows the linkages among different scientific journal articles and biomedical subspecialties. These accounts, however, begin with the a priori assumption that the "field" that generates AIDS knowledge encompasses only mainstream researchers and mainstream scientific journals. Analyses that, for example, take seriously the role of grassroots treatment publications in the dissemination of scientific knowledge about AIDS are few and far between.
Some of the earliest writers on social aspects of AIDS, including Dennis Altman and Cindy Patton, have perspectives closer to my own, insofar as they devote close attention to questions of scientific controversy, expertise, and the politics of gay communities. Patton's subsequent work in her book Inventing AIDS and Altman's in Power and Community are crucially concerned with the democratization of knowledge and the politics of expertise in ways that I have found insightful and stimulating. Also related to my own work is that of Paula Treichler, who, in a series of articles, has analyzed the scientific discourse of AIDS to reveal the social construction of medical knowledge. Although she has not comprehensively or systematically analyzed the causation and treatment controversies, her insightful writing on both of these topics has informed my own work. Various analysts, such as Susan Sontag, Simon Watney, and Emily Martin, have studied the discursive construction of AIDS, while Watney and a number of others have provided excellent description of the framing of AIDS in the mass media.
There have been surprisingly few detailed analyses of the AIDS activist movement, though there are notable examples from which I have benefited significantly. While the responses of gay and lesbian
communities to the epidemic have been documented fairly thoroughly, other constituencies, such as women, African-Americans, Haitians, prostitutes, and injection drug users, have only recently become subjects of extensive investigation (and others, such as people with hemophilia, remain to be investigated). The innovative role of health professionals in the epidemic has also been given less attention than one might expect, although analysts such as Charles Bosk and Joel Frader, Mary-Rose Mueller, Robert Wachter, and Charles Rosenberg have made important contributions. Finally, a number of authors have studied institutional and organizational dimensions of the social response to AIDS, while others have focused usefully on questions of meaning and social identity.
Several writers, including Stephen Murray and Kenneth Payne, have sought to describe and interpret the initial medical speculation about AIDS in the early 1980s (the subject of my chapters 1 and 2). By contrast, there has been surprisingly little scholarly attention paid to Duesberg and the other HIV dissenters (my chapters 3 and 4), the primary exception being the work of Joan Fujimura and Danny Chou. The early impact of AIDS activism on the conduct of clinical trials (see my chapters 5 through 7) has been discussed in a number of works, most of which appeared in the early 1990s—in greatest analytical detail by Peter Arno and Karyn Feiden. This latter group of analyses, each of which has contributed significantly to my understanding of treatment issues, has its strengths and weaknesses but tends overall to bracket consideration of knowledge claims as such. The authors pay little attention to the constitution of scientific knowledge and the relation between frameworks of knowledge and particular technological products (drugs). By contrast, my analysis of treatment controversies tries to bring together, in a systematic way, concerns with drug testing and approval, scientific strategies, and processes of constructing facts and beliefs.
The extensive literature on the social aspects of AIDS not only informs my analysis at every turn but its existence also provides me with a justification, of sorts, for the gaps and omissions in my own account. Let me briefly enumerate some of the most glaring. First, although the United States occupies a dominant position and English-language sources tend to establish the terms of the debate, the scope of AIDS research is indisputably international. However, the resources of any one investigator are finite, and given an overwhelmingly large subject I have been forced to make choices. Therefore I have generally restricted
my focus to the United States, even where such restriction necessarily does some violence to the true empirical boundaries of the "field" constitutive of AIDS knowledge. In considering activism, moreover, I have focused primarily on gay activists, who have been most visible and forceful. Even there I have tended to emphasize (or perhaps overemphasize) the actions and perspectives of New Yorkers and San Franciscans, who have indeed set the tone for national debates. (For more information on sources consulted, refer to the Methodological Appendix.)
Second, in my discussion of treatments in part two of the book, I restrict my attention largely to the development of anti-HIV therapeutic agents (antiretroviral drugs) because this provides me with a relatively well-bounded case study in an area that has received heavy scientific and media attention and a great deal of activist involvement. As a result, I say little about the development of drugs to treat opportunistic infections or boost immune functioning or about the development of vaccines (either preventive or therapeutic) or about non-Western therapies. It should be clear that activists have participated in debates about all of these dimensions of research and treatment, and the debates surrounding them cannot wholly be dissociated from those concerning the antivirals. I leave it to others to explore these topics in detail.