Science and the Struggle for Credibility

To no small degree, the first decade and a half of AIDS research in the United States has been marked by the sustained lay invasion of the domain of scientific fact-making. What have been the dynamics of interventions by uncredentialed participants in biomedicine? What have been their consequences? These questions demand attention to the specific character of credibility struggles in AIDS research and to the techniques employed by representatives of the AIDS movement in establishing their collective voice within science. After summarizing this analysis, I will turn to an assessment both of the concrete effects of AIDS activism and its varied implications for future struggles in biomedicine and other scientific domains. I will conclude by arguing that this case is important for what it tells us about the power inherent in expertise and about the deep dilemmas confronting social movements that seek to "democratize" science and technology.

The Boundaries of Impure Science

The production of biomedical knowledge about the causes of and treatments for AIDS cannot be understood except with reference to a scientific field that is unusually broad and public and the site of an extraordinary degree of contestation. The shifting dimensions and porous borders of this field are not predetermined by any essential characteristics of science; rather, they become evident to the analyst by means of tracing the rebounding pathways of influence and engagement.^[1] That crucial debates about AIDS are resolved through credibility struggles within a field of this sort is readily demonstrated by the dynamics of the causation controversies described in part one. An initial process of closure by virologists (the "black-boxing" of the HIV hypothesis) was strengthened through ratification by biomedical institutions, public health organizations and governmental bodies, the mainstream media, and grassroots AIDS organizations. Certainty about the causal role of HIV solidified before all details of the putatively required evidence were obtained, precisely because the hypothesis was plausible, the claimants were credible, and the viral hypothesis satisfied the interests of various players, both "insiders" and "outsiders." Dissenting voices were isolated until the appearance of Peter Duesberg with his impressive scientific credentials. Yet Duesberg's article in Cancer Research was ignored until it was taken up by a group of lay supporters who publicized the controversy. Mass media coverage then led directly to Duesberg's presentation of his arguments in the pages of Science and the Proceedings of the National Academy of Sciences . And these scientific publications, in turn, "proved" Duesberg's credibility to many laypeople and reporters while attracting the interest of other scientists such as Kary Mullis, Robert Root-Bernstein, and Walter Gilbert. It seems likely that without the sustained, interactive participation of scientists, the mass media, and voices within the AIDS movement, the controversy simply would not have achieved significance, either socially or scientifically, and the "black box" ("HIV causes AIDS") would never have been reopened for consideration.

Certainty and uncertainty about the efficacy of antiretroviral drugs (the subject of part two) are even more obviously collective products and outcomes of credibility struggles. Principal investigators of clinical trials have made claims and counterclaims. Government agencies and advisory bodies have assessed risks and benefits. Physicians have believed or disbelieved and have conveyed their assessments to patients.

Patients have complied with study protocols or disobeyed them and have demanded drugs or rejected them. Grassroots publications have bypassed the traditional pathways of publication in science, spreading information and opinions about treatments to patients around the world. Treatment activists have challenged the calculus of risks and benefits, and by becoming "lay experts" they have helped change the rules governing the kinds of evidence required to determine efficacy. It was in the nexus of interactions among these principals that facts were made, expertise constructed, and social order forged.

This analysis suggests the need for new approaches to the study of the politics of knowledge-making in scientific controversies with overtly public dimensions. Analysts of science and medicine should attend to the strategies pursued by lay actors in their attempts to speak credibly about science and medicine—how they frame arguments, how they disseminate scientific information, how they build their own expertise, and how they enlist supporters behind them. In particular, while the analysis of social movements has been commonplace elsewhere, it has been relatively underdeveloped in both the sociology of medicine and the sociology of science.^[2] The case of AIDS activism suggests that social movements can pursue distinctive forms of participation in science and, conversely, that the engagement with science can shape such movements in powerful ways. An extended study of the relation between biomedicine and social movements could provide a deeper and more comprehensive analysis of the construction of medical knowledge and the transformation of medical practice.

Credibility and the Management of Uncertainty

As players execute their moves within the field, they, as well as the audiences they play to, must assess the credibility of various claims-makers. Everyone looks to markers that seem to certify the trustworthiness and competence of claimants, yet these markers are highly variable and surprisingly unstable. According to Robert Gallo, Duesberg lacked credibility because he was a chemist with no medical training. Martin Delaney agreed with Gallo, but also portrayed Duesberg as someone who—unlike Joseph Sonnabend—had no personal ties to the communities afflicted by the epidemic and whose moral credibility was therefore suspect. For many journalists and people

with AIDS or HIV, the cloud of suspicion that hung over Gallo following his dispute with Luc Montagnier cast doubt on any and all claims he put forward, while Duesberg seemed credible precisely because he was challenging an entrenched and untrustworthy orthodoxy. Treatment activists could speak credibly at ACTG meetings because they "knew their science," yet in other venues they could speak more credibly than the mainstream researchers because theirs was the voice of moral outrage. A long-term survivor like Michael Callen enjoyed credibility within the AIDS movement at least partly by virtue of staying alive: the markers of credibility were inscribed on his own body.

The scrutiny of individuals' tokens of credibility has not prevented the various parties from arriving at careful assessments of specific knowledge claims about the etiology of AIDS or the efficacy of antiretroviral drugs. But given the lack of unanimity about how to interpret the evidence—Are Koch's postulates the gold standard or aren't they? Is there a relevant animal model for AIDS or isn't there? Has the definitive clinical trial been performed or hasn't it?—it's not surprising that the varying assessments of credibility have focused so much on the claimants , and not just the claims .

Negotiations of credibility, in this sense, can be understood as mechanisms for the management and resolution of scientific uncertainty. One of the important findings of the sociology of scientific knowledge is that experiments do not, in the simple sense usually understood, "settle" scientific controversies. Nothing inherent in an experiment definitively establishes it as the "crucial" test of a hypothesis. Rather, scientists negotiate precisely what counts as evidence, which experiments represent a hypothesis adequately, and whether an instance of replication is a faithful recreation of a prior study.^[3] Given the possibility of dispute on these points, uncertainty is often not just the cause of scientific controversy but its consequence.

The "interpretative flexibility" built into scientific findings was amply demonstrated, for example, by the initial reactions to the Concorde study—all of which seemed to follow predictably from the prior commitments of the actors. It wasn't so much that an inherent degree of uncertainty in the study sparked controversy about how to interpret it, as the fact that preexisting debate about AZT use in asymptomatics led various parties to endorse the study or to deconstruct it in different ways. Even a year later, Douglas Richman, one of the defenders of early intervention with antiretroviral drugs, would describe Concorde

as a study with "no relation to reality": "Their data [are] perfectly true, it's just that they're irrelevant, and they're asking the wrong question."^[4]

The notion that a "definitive" clinical trial can settle the question of drug efficacy or that a "definitive" epidemiological study can establish, once and for all, HIV's etiological role misses this fundamental point: a study's "definitiveness" is not given but is a negotiated outcome and one that may be actively resisted by some parties to the controversy. The extent to which closure is achieved, therefore, depends crucially on the capacity of actors to present themselves as credible representatives or interpreters of scientific experiments—to ensure that others trust their evaluations and will fall in line behind them.

Pathways to Credibility

If raw evidence alone does not resolve scientific controversies, and if the credibility of claims-makers must be invoked to give claims their force, what sorts of credibility are most potent? Certainly nothing in this study casts doubt on the supposition that the presentation of suitable and traditional credentials is the simplest and easiest route to establishing and maintaining credibility in biomedicine. Indeed, this is true not only in the construction of orthodox science but in the promotion of "heresy" as well. Even Sonnabend, a doctor with a history of scientific research, had no luck, after 1984, in gaining scientific support—or substantial extrascientific support—for his views. It took Duesberg's weightier status as a renowned molecular biologist and virologist to bring the causation controversy to general attention. (Hence, even those lay supporters of Duesberg who prided themselves on their iconoclasm typically pointed to Duesberg's impeccable credentials as an indicator of the legitimacy of dissent.)

Anyone doubting the power inherent in traditional markers of scientific accomplishment need only look to the example of Luc Montagnier, who (despite being rejected by both Duesberg and Gallo) was so frequently invoked as an ally for this or that side in debates about causation. Was Montagnier a dissident at heart? Had he undergone a conversion experience over time? Or was he just a mainstream researcher within a research community that was actually far more open to a range of views than the dissenters cared to admit? The multiple Montagniers who have been presented in the causation controversy

are testament to the widespread recognition that Montagnier's support (or his perceived support) was a coin well worth possessing.

In a politicized and public controversy, however, credentials are a less sturdy indicator of credibility than they may first appear. One reason the media play such a crucial role in these stories is precisely because they transmit and construct meanings about what sort of expertise a credential entitles one to claim: "Media are likely to place greater emphasis on such credentials as awards (especially the Nobel Prize) and institutional affiliation and less emphasis on the scientist's disciplinary area of expertise," notes Rae Goodell.^[5] Furthermore, the "anointing" of spokespersons by the media affects perceptions of credibility by constructing a parallel system of informal credentials. Media visibility, for example, has helped to cement the status of treatment activist leaders such as Mark Harrington and Martin Delaney, who are quoted routinely and regularly in publications such as the New York Times and not infrequently in the scientific press. Media designations of who counts as a spokesperson do not simply mirror the internal stratification of a social movement or a scientific community, but can even construct such hierarchies.^[6]

Of course, Harrington would not have been quoted in Science or the New York Times in the first place had not ACT UP already succeeded in establishing itself as a credible player. These are perhaps the most interesting questions about credibility in the case of AIDS: What tactics do social movements pursue in order to marshal credibility in scientific controversies? How do movements that seek not to reject science but to transform it develop their capacity to make an impact "on the inside"? The case of AIDS treatment activism is instructive: it suggests that certain kinds of social movements, when pursuing distinctive strategies, can acquire credibility within specific domains of scientific practice. It matters that biomedicine is relatively more open to outside scrutiny than are other arenas of science and technology. But it also matters that activists have played their cards well.

First, activists imbibed and appropriated the languages and cultures of the biomedical sciences. By teaching themselves the vocabularies and conceptual schemes of virology, immunology, and biostatistics, activists have succeeded in forcing credentialed experts to deal with their arguments. Experts who maintained even nominal adherence to the notion that scientific arguments should be evaluated "without regard to person" have often found it difficult to dismiss such arguments simply on the basis of their "questionable" origin.^[7] Second, activists

have successfully established themselves as the voice of the clinical investigators' potential population of research subjects. Activists have thereby located themselves as an "obligatory passage point," and researchers and NIAID officials have had little choice but to engage them in discussion about trial protocols.^[8] But activists also came forward as the bearers of privileged knowledge of patients' desires that would benefit researchers seeking to accrue subjects for their trials. Some researchers therefore came to welcome, or at least acknowledge benefits of, activist participation in the design of clinical trials.

Third, activists have gained credibility by yoking together moral (or political) arguments and methodological (or epistemological) arguments. For example, activists have contended that the inclusion of women and members of racial minority groups in clinical trials is both more ethical, insofar as it provides widespread access to experimental medications, and scientifically preferable by virtue of the fact that it produces more generalizable findings. Though activists' credibility in some arenas (such as the media) typically reflects their capacity to monopolize the moral high ground, their influence on scientific procedures owes more to their knack of translation between political and technical languages. Finally, activists have seized upon preexisting lines of cleavage within the biomedical establishment. In debates between biostatisticians and researchers, and between researchers and practicing physicians, activists have thrown their weight on one side or the other—sometimes tipping the balance.^[9] In effect, activists have been able to "enroll allies" with the same result as that described by Bruno Latour in his analyses of scientists: they have strengthened their scientific claims against assault by bringing supporters on board.^[10]

Once activists succeeded in establishing their credibility, they were able to gain representation on NIH and FDA advisory committees, institutional review boards at local hospitals and research centers, community advisory boards established by pharmaceutical companies, and—most recently—President Clinton's National Task Force on AIDS Drug Development. These strategic positions, in turn, have provided activists with an enhanced capacity to advance their arguments and augment their credibility. By introducing new "currencies" of credibility into circulation, and by successfully establishing a value for these currencies within the scientific field, activists have, in effect, transformed the field's mechanisms of operation—that is, they have transformed how biomedical knowledge gets made.^[11]

The much greater leverage exerted by laypeople in AIDS treatment

controversies than in the causation controversies reinforces the point that such successes are highly dependent on context. Although laypeople have played a crucial role in stoking the fires of the causation controversies, ultimately, lay actors have been far less capable of influencing debates about causation (a more insulated preserve of biomedicine) than those concerned with treatment (a more public and "applied" domain). Indeed, in the causation controversies, the rhetoric of "democracy" has been limited mostly to questions of academic freedom and the right of dissenting scientists to speak their piece. And even within the domain of treatment research, activists have been most successful when focused on clinical research as opposed to basic research, despite interesting recent moves by activists in the latter direction. The conduct and interpretation of clinical trials is the area where AIDS activists have made the most impact—where their tactics for obtaining credibility have proven most efficacious and where such credibility has proven most consequential in shifting the social construction of certainty.

This contribution to knowledge-making is, in the most direct sense, enabled by the activists' own vantage point: they (or the research subjects they represent) are implicated within the experimental apparatus—they are part of the experiment—and thus they have insights into how such experiments might be better conducted. To use Donna Haraway's term, activists can generate "situated knowledges": "partial, locatable, critical knowledges" produced by social actors on the basis of their position or location in society.^[12] Like the environmental justice activists described by Giovanna Di Chiro, whose expertise is rooted in their very "living" and "breathing" at the epicenter of a toxic environment, AIDS activists have something to say simply because of where they stand.^[13] This more immediate role of patients in clinical research, combined with the relatively greater accessibility of research methods to lay comprehension, explains the enhanced capacity of laypeople to intervene in debates about trial design and interpretation.