Credible Knowledge Hierarchies of Expertise, and the Politics of Participation in Biomedicine
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. 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. 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. 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."
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. 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.
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. 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. 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. 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.
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.
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. 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. 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.
The Transformation of AIDS Research
Credit Where Credit is Due
That treatment activists have succeeded in establishing their scientific credibility and their cultural competence in biomedicine is widely acknowledged by a range of eminent researchers and government health officials. Although such testimonials appear sincere, they
need not, of course, be taken entirely at face value. However, even the most cynical interpretation would suggest that these authorities see the activists as important enough to merit flattery. (This, too, is a credibility tactic that researchers can employ.) Anthony Fauci has made clear that "there are some [activists] who have no idea what the hell they're talking about," but he was nonetheless happy to grant that "there are some that are brilliant, and even more so than some of the scientists." Robert Gallo has called Martin Delaney "one of the most impressive persons I've ever met in my life, bar none, in any field. … I'm not the only one around here who's said we could use him in the labs." Gallo described the level of scientific knowledge attained by certain treatment activists as "unbelievably high": "It's frightening sometimes how much they know and how smart some of them are." Prominent academic researchers also typically acknowledge the gradual acquisition of scientific competence on the part of key activists. "Mark Harrington is a perfect example," recalled Douglas Richman. "In the first meeting [of the Community Constituency Group] he got up and gave a lecture on CMV … that I would have punished a medical student for—in terms of its accuracy and everything else—and he's now become a very sophisticated, important contributor to the whole process." Reflected John Phair, a former chair of the ACTG Executive Committee: "I would put them up against—in this limited area—many, many physicians, including physicians working [with] AIDS. They can be very sophisticated."
Praise of treatment activists by biomedical authorities is one measure of the activists' acquisition of credibility. But real-world consequences speak louder: What difference has it made to have activists involved in issues of AIDS research and drug development? How has biomedical research been reconfigured as a result? Examples prove to be numerous: The arguments of AIDS activists have been published in scientific journals and presented at formal scientific conferences. Their publications have created new pathways for the dissemination of medical information. Their pressure has caused the prestigious journals to release findings faster to the press. Their voice and vote on review committees have helped determine which studies receive funding. Their efforts have led to changes in the very definition of "AIDS" to incorporate the HIV-related conditions that affect women. Their interventions have led to the establishment of new mechanisms for regulating drugs, such as expanded access and accelerated approval. Their arguments have brought about shifts in the balance of power between
competing visions of how clinical trials should be conducted. Their close scrutiny has encouraged basic scientists to move compounds more rapidly into clinical trials. And their networking has brought different communities of scientists into cooperative relationships with one another, thereby changing patterns of informal communication within science. Though activists have never sought or established absolute jurisdiction over any contested scientific terrain, they have, to use Andrew Abbott's term, won the rights to an "advisory jurisdiction" analogous to the relation of the clergy to medicine or psychiatry. Of course, as Abbott notes, advisory jurisdictions are characteristically unstable, "sometimes a leading edge of invasion, sometimes the trailing edge of defeat."
The Politics of Access
Drug regulation is one arena where the sheer effect of activism would be hard to dispute. Activists were not the only ones calling for change in the FDA, but they were the key players in pushing for the approval of AIDS drugs at an earlier stage in the drug development pipeline. And although some procedures allowing early access to experimental therapies were already on the FDA's books, others, such as expanded access and accelerated approval, are new to medicine as a result of AIDS, and have resulted in the provision of such therapies to much larger groups of patients than had been the case in the past. (Expanded access has since been instituted for drugs treating other diseases, such as Alzheimer's, while a drug for multiple sclerosis has received accelerated approval. This book has not focused on drugs that treat or prevent opportunistic infections, but it is perhaps there that the significance of activist efforts has been felt most keenly: earlier access to anti-infective drugs, though not without risk, has meant a longer life and better quality of life for many people with AIDS and HIV. In addition, activist efforts (for better or worse) propelled the adoption of interpretative mechanisms such as surrogate markers that, in turn, have hastened the approval process. Absent the AIDS activists, CD4 counts would not have been accepted as a surrogate marker of treatment efficacy in 1991; without the adoption of the CD4 marker, the AZT/ddC combination would not have been licensed in 1992.
Finally, activists have insisted on broadening the demographic characteristics of clinical trial participants, hence broadening access to experimental therapies. In fiscal year 1988, 82 percent of the new
subjects recruited into ACTG trials were white. By 1994, only 56 percent were white (26 percent were African-American, 16 percent were Hispanic/Latino, and 2 percent were "other"). Over the same period, the ratio of men to women in trials was reduced from about thirteen to one to about five to one. While activists cannot take all the credit for the demographic diversification of trials, there can be little doubt that politicization of the issue by activists brought about a climate in which change became perceived as a necessity. The minutes of the ACTG Executive Committee meetings recorded Daniel Hoth's exhortations to investigators to diversify trials: on one occasion Hoth noted that the ACTG was "under a great deal of political pressure to address this issue successfully"; on another, he described a phone conversation with the assistant secretary of health, "who had called to ask what the ACTG was doing to increase minority participation." These new emphases at NIAID were matched by changes at the FDA: in March 1993 agency officials announced that, instead of excluding women of childbearing age from trials, they would henceforth insist on their inclusion in nearly all new drug applications. "We now believe that there are ways to protect the fetus and to include women in studies at the same time," David Kessler told the press.
Beyond the very real concerns about risks to patients, the key criticism of expedited access to experimental therapies has focused on the potential threat to the research process. If, for example, patients were able to obtain drugs like ddI and ddC through expanded access programs, why would they bother to sign up for long-term clinical trials? This criticism ignores the other reasons why patients might enroll in trials—for example, altruism or the desire to obtain access to high-quality medical care and intensive monitoring of their medical condition. But in the end, as Anthony Fauci notes, "the proof of the pudding is that we were right. [Expanded access] hasn't hampered anything"; research subjects have enrolled and the trials have still been completed.
"Situated Knowledges" and the Lure of Science
Besides drug regulation, the other arena in which the hand of activism has most heavily been felt is the design and methodology of clinical trials. Here, activists have trained their attention on a range of apparently narrow and technical questions: Was there truly
a scientific necessity to exclude potential research subjects with abnormal lab test values? Was there anything from a statistical standpoint that prevented patients from taking concomitant medications or being enrolled in more than one trial at a time? By raising these questions, activists, sometimes with support from biostatisticians, have helped bring changes to the world of AIDS trials, making the procedures that governed them more similar to those already in place for cancer trials. "The way I looked at it is that, when the wind is blowing hard, you can either bend or you can break," recalled former NCI and NIAID biostatistician Susan Ellenberg. "I think we bent a lot in terms of the way we normally do trials. I think we stood firm in terms of the most important principles. …"
By pressing researchers to develop clinically relevant trials with designs that research subjects would find acceptable, activists have helped to ensure more rapid accrual of the required numbers of subjects and to reduce the likelihood of noncompliance on the part of those participating. And by working toward methodological solutions that satisfy, simultaneously, the procedural concerns of researchers and the ethical demands of the patient community, AIDS activists have, at least in specific instances, improved a tool for the production of knowledge in ways that even researchers acknowledge. In this sense, AIDS activists' efforts belie the commonplace notion that only the insulation of science from "external" pressures guarantees the production of secure and trustworthy knowledge.
In the aftermath of the Concorde trial, with its implication that changes in CD4 counts are not, as activists had maintained, an adequate surrogate marker for antiviral drug efficacy, there were suggestions that AIDS activists had muddied the waters of knowledge in their haste to see drugs approved. Activist insistence on the use of surrogate markers had "set back AIDS research for ten years," researcher and Antiviral Advisory Committee member Donald Abrams grumbled with some hyperbole in late 1993. Yet any such assessment must consider the larger picture. Absent the activists, what sort of knowledge strategies would have been pursued? Pristine studies addressing less-than-crucial questions? Methodologically unimpeachable trials that failed to recruit or maintain patients? Inevitably, there are risks inherent in the interruption of the status quo. But these must be weighed against all the other attendant risks, including those that might have followed from letting normal science take its leisurely course while an epidemic raged.
In their critiques of "pure" or "clean" or "elegant" science, and in their invocation of the "real world" and "pragmatic" decision making, AIDS activists have emphasized the local and contextual character of usable scientific knowledge. In the mainstream conception of science epitomized by the randomized clinical trial, true knowledge is produced through abstraction and the transcendence of particularities. In the alternative conception that develops out of activist critiques, reliable knowledge is produced through close attention to the concrete social, moral, and political context: better science comes about because of the focus on individual patients and their needs, desires, and expectations. This alternative conception of science is willing to surrender claims to universal validity in exchange for knowledge that bears some local and circumscribed utility.
At the same time, as some of the treatment activists have moved "inward" to cooperate closely with researchers and have become increasingly sensitized to the logic of biomedical research, their conceptions of the scientific process have turned in a more conventionally positivist direction. This development has led to cleavages within the movement about how to approach the politics of knowledge. "I've seen a lot of treatment activists get seduced by the power, get seduced by the knowledge, and end up making very conservative arguments," contends Michelle Roland, formerly active with ACT UP in San Francisco. "They understand the science and the methodology, they can make intelligent arguments, and it's like, 'Wait a minute … okay, you're smart. We accept that. But what's your role?'" Ironically, insofar as activists start thinking like scientists and not like patients, the ground for their unique contributions to the science of clinical trials may be in jeopardy of erosion. ACTG researcher John Phair notes that activists "have given us tremendous insight into the feasibility of certain studies" but adds that "some of the activists have gotten very sophisticated, and then [they] forget that the idea might not sell" to the community of patients.
Can one be both activist and scientist? Is the notion of a "lay expert" a contradiction in terms? There are no simple answers here, nor should we expect there to be. But arguably, it was not possible for key treatment activists to become authorities on clinical trials and sit on the ACTG committees without, in some sense, growing closer to the worldview of the researchers—and without moving a bit away from their fellow activists engaged in other pursuits. It is no surprise that activists with this degree of intellectual sophistication are themselves reflexively engaged in the consideration of precisely such issues.
Michelle Roland commented on the differentiation of activism in intriguing terms: "I hold on to the very strong belief that the only way that I'm going to do really good work is if there are people who do not know what I know—[people] who are always coming from that very emotional, very bottom-line place, to keep reminding me about that place."
Trials and Truth-Making
In the end, it remains somewhat unclear precisely what approaches to, or conceptions of, science activists would like to promote. Are AIDS activists really just trying to "clean up" science by eliminating "biases" that academic researchers are introducing? Or to supplant "clean science" with something that answers to different epistemological and ethical aspirations? It may be the tension between these conflicting and ambiguously defined goals, more than anything else, that characterizes the activist engagement with the AIDS research effort. The attempt to wrestle with such ambiguities is apparent in activists' views of the randomized clinical trial as a technology for producing knowledge. Generally speaking, activists have rejected a narrow, positivist conception of the clinical trial as a controlled laboratory experiment, pure and simple. But not many of them are prepared to replace the randomized clinical trial with an entirely different method of assessing drugs.
By contrast, in her analysis of controversial cancer trials, Evelleen Richards concludes with a call to curtail our reliance on the randomized clinical trial. Since the notion of a "definitive" clinical trial, she claims, is a myth that primarily serves the interest of professional legitimation, it would be better "to learn to live with the reality of uncertainty" and to introduce political, ethical, and subjective criteria into the evaluation of treatments. This "implies a more prominent role for non-experts, for patients and the public at large, in the processes of assessment and decision making. …" Quite similarly, AIDS activists have emphasized the artifactual and historical character of the clinical trials methodology, and they have placed a spotlight on the perception of the patient as a genuine participant in clinical research and not just the object of study. Yet—perhaps especially as they have become enculturated into the biomedical research process—most AIDS treatment activists share with doctors and researchers a profound investment in the belief that the truth about treatments is, in principle, knowable through some application of the scientific
method. Though many in the AIDS movement have at particular moments argued in favor of tolerating uncertainty as the necessary tradeoff for access to experimental drugs, in the end few activists, and perhaps few people with AIDS or HIV infection, are sanguine about the prospect of "[living] with the reality of uncertainty." This is not surprising, since activists and people with AIDS and HIV are confronted daily by a burning need to know whether given treatments "work" or not. The activist critique of the randomized clinical trial unseats that methodology from the pinnacle on which it is sometimes placed, but it also assumes (I think rightly) a greater role for such trials than analysts such as Richards would recommend.
Just how radical, then, is the critique of science offered by AIDS treatment activists? The question is hard to answer, especially as positions shift over time and vary significantly between individuals and groups. But what sparks the ambivalence between radical and reformist perspectives on science are just these painful ironies that vex efforts to influence clinical practice. On one hand, engagement with clinical research has always been driven by the dictates of expediency and dire need: activists have no time for the leisurely pursuit of truth; they'll settle for today's best guess. Yet on the other hand, treatment activists—particularly the New Yorkers with the Treatment Action Group, but to some extent nearly all of them—have increasingly become believers in science (however understood), and they desperately want clinical trials to generate usable knowledge that can guide medical practice. "My doctors and I make decisions in the dark with every pill I put in my mouth," complains David Barr, and this is not an easy way to live.
Insofar as activists want to rely on the knowledge generated by clinical trials, they must wrestle with the consequences of their own interventions. Do such actions enhance activists' capacity to push clinical research in the directions they choose? Or do activists and researchers alike become subject to the unintended effects of their words and deeds, trapped within evolving systems whose trajectories no one really controls? Here is a worst-case scenario of the spiraling effects of community-based interventions in the construction of belief in antiviral drugs—a caricature sketch, to be sure, but one that combines elements from a number of cases: Drug X performs well in preliminary studies, and a NIAID official is quoted as saying that X is a promising drug. The grassroots treatment publications write that X is the up-and-coming thing; soon everyone in the community wants access to
X, and activists are demanding large, rapid trials to study it. Everyone wants to be in the trial, because they believe that X will help them; but researchers want to conduct the trial in order to determine whether X has any efficacy. Those who cannot get into the trial demand expanded access, while others begin importing X from other countries or manufacturing it in clandestine laboratories. As X becomes more prevalent and emerges as the de facto standard of care, physicians begin to suggest to patients that they get hold of it however they can. Meanwhile, participants in the clinical trial of X who fear they are receiving a placebo or an inferior drug mix and match their pills with those of other participants. When the trial's investigators report potential treatment benefits, activists push for accelerated approval of X, leaving the final determination of X's efficacy to postmarketing studies. But who then wants to sign up for those studies, when everyone now believes that the drug works , since, after all, the FDA has licensed it and any doctor can prescribe it?
In seeking to control this troubling escalation, the recent moves on the part of TAG activists to extricate themselves from the "hype cycle" seem particularly important. "One disturbing but inevitable result of the urgency engendered by the AIDS crisis," wrote Mark Harrington in late 1993, "is that both researchers and community members tend to invest preliminary trials with more significance than they can possibly bear." To the extent that activists can develop a critique of this phenomenon and communicate the relative uncertainty of such trials to the broader public of HIV-infected persons, it may be possible to imagine a clinical trials process that more fully reflects the interests of those who are most in need of answers.
On the other hand, the turn toward positivism in the statements of some TAG members—the emphasis on "rigor," "objectivity," and "rule-following" as the guarantors of success —seems not only inadequate but inconsistent with the goal of not making more of trial results than we ought. As the earlier optimism about finding solutions to AIDS has given way to disappointment or resignation, it is understandable that some activists would find the lure of "good science" vastly preferable to the subordination of scientific judgment to the exigencies of the moment, however profound. The trick, though, is to encourage trials that are both ethical and well designed without reifying the method so as to suggest that such trials will provide degrees of certitude that they simply cannot provide. As Brian Wynne has suggested, the solution cannot be to further the myth that clinical
knowledge-production is a fully rule-bound enterprise. Rather, the only way forward is to open the "black box" of clinical research, expose the uncertainty and the value choices, and then convince people of the considerable importance of participating in such research even after they understand just how messy it truly is and how bounded is the usability of the knowledge produced by it.
The Legacy of AIDS Activism
The Refashioning of Patients and Doctors
The impact of the AIDS movement on biomedical institutions in the United States has been impressive and conspicuous. At the same time, as Alberto Melucci has noted, social movements often have a "hidden efficacy" which becomes apparent only over time: by challenging cultural codes and conventions, they suggest to the broader society "that alternative frameworks of meaning are possible and that the operational logic of power apparatuses is not the only possible 'rationality.'" Given the diverse influences that AIDS activism has already begun to exert, it seems likely that the movement will engender just this kind of shift in systems of meaning.
For instance, it has rapidly become something of a cliché to say that the doctor-patient relationship will never be the same in the wake of AIDS. As Stanford AIDS researcher Thomas Merigan reflected, "The doctor isn't the same doctor [as] when I started in practice. … The doctor in the past was somebody who made your decisions for you and held your hand; and … you would just believe in him." Granted, models of interaction between doctors and patients have diversified considerably in recent decades: AIDS provides a convenient frame for summarizing changes that were already in the works. What is perhaps the significant effect of AIDS, then, is that a more cooperative model has become normative (at least in medical rhetoric) and has been incorporated into medical school curriculums. This changed conception of the doctor-patient relationship has also been linked explicitly to an emergent understanding of the appropriate researcher-subject relationship. Patients have a "participant's interest" in clinical research that extends beyond the mere protection of their "rights" as "human subjects"; communities have a stake in the review of research protocols that is not satisfied by the token request for their "input."
"Having our patients or our research subjects ask—or demand—to have an active voice in what we do and how we do it may be challenging, time-consuming, and even unpleasant," comments UCSF's Robert Wachter, one of the organizers of the International AIDS Conference in 1990. "It is also undeniably right."
On first glance it may be surprising, but on reflection it seems predictable that one of the ways in which AIDS treatment activists are changing the character of medical relationships is by deciding, in some cases, to pursue careers in medicine. Two of the activists interviewed for this book, Michelle Roland and Rebecca Smith, had already proceeded from ACT UP to medical school; a third, Garance Franke-Ruta, aspires to the "medical school class of 2000." "I was always interested in medicine," Roland recalls, "but I did not want to go to medical school"; "I did not like doctors, I thought they were arrogant, I thought they were just not pleasant people, I thought their values were fucked up—and I did not like Western medicine. I, at that point, wouldn't take aspirin for a headache. You know, I was one of those people." Ironically, it was Roland's experiences with ACT UP that made her recognize "that medical training was going to give me the power that I wanted [in order] to influence health care," and "that I was going to be a much more powerful advocate and a much more intelligent advocate if I understood what I was arguing about, and if I understood what the people I was arguing with believed. …" Smith, meanwhile, has sought to use her activist experience to improve the medical curriculum at her university by increasing students' exposure to the statistical principles underlying clinical trials.
New Voices on the Medical Horizon
The AIDS movement has encouraged individual patients to seek new ways of relating to their health-care providers and vice versa. But it has also inspired a range of organized challenges to biomedicine, some of which have developed into full-fledged social movements. Certainly, the history of medical self-help groups—ranging from the most reformist to the most radical—long precedes AIDS activism. But the past few years in the United States have seen a marked upsurge of health-related activism of a distinctive type: the formation of groups that construct identities in relation to particular disease categories and assert political and scientific claims on the basis of these new identities. With its assimilation of the critiques put
forward by the feminist health movement, the AIDS movement was a beneficiary of "social movement spillover"; now its own tactics and understandings have begun to serve as a "master frame" for a new series of challengers.
Most notably patients with breast cancer but also those suffering from chronic fatigue, multiple chemical sensitivity, prostate cancer, mental illness, Lyme disease, Lou Gehrig's disease, Alzheimer's, and a host of other conditions have displayed a new militancy and demanded a voice in how their conditions are conceptualized, treated, and researched. These groups have criticized not only the quality of their care but the ethics of clinical research ("Are placebo controls acceptable?") and the assignment of control over research directions ("Who decides which presentations belong on a conference program?"). While not every such group derives its approaches directly from AIDS activism, the tactics and political vocabulary of organizations like ACT UP would seem, at a minimum, to be "in the wind." (Could one imagine, before the AIDS activist repudiation of "victimhood," people with muscular dystrophy denouncing the Jerry Lewis Telethon as an "annual ritual of shame" and chanting "Power, not pity" before the news cameras? ) To date, none of these constituencies has engaged in epistemological interventions that approach, in their depth or extent, AIDS treatment activists' critiques of the methodology of clinical trials. But Bernadine Healy, then director of the NIH, expressed it well in 1992 when she told a reporter: "The AIDS activists have led the way. … [They] have created a template for all activist groups looking for a cure."
Breast cancer activism is an intriguing instance of this new wave, because the links to AIDS activism have been so explicit and so readily acknowledged. In 1991, more than 180 U.S. advocacy groups came together to form the National Breast Cancer Coalition. "They say they've had it with politicians and physicians and scientists who 'there, there' them with studies and statistics and treatments that suggest the disease is under control," read a prominent account in the New York Times Sunday Magazine . In its first year of operation, the coalition convinced Congress to step up funding for breast cancer research by $43 million, an increase of almost 50 percent. "The next year, armed with data from a seminar they financed, the women asked for, wheedled, negotiated and won a whopping $300 million more." The debt to AIDS activism was widely noted by activists and commentators alike. "They showed us how to get through to the Government," said
a Bay Area breast cancer patient and organizer. "They took on an archaic system and turned it around while we have been quietly dying." Another activist described how she met with the staff of AIDS Treatment News to learn the ropes of the drug development and regulatory systems. In 1994, ACT UP/Golden Gate participated with San Francisco-based Breast Cancer Action in a "funeral procession" -style protest against the Genentech Corporation to demand access to a monoclonal antibody with potential efficacy against the disease.
Gracia Buffleben, a "48-year-old heterosexual housewife and nurse" who joined Breast Cancer Action after her own diagnosis with cancer, was initially astonished by the expertise of the AIDS activists: "It was unbelievable to me that somebody could have the depth of knowledge that they had and not have a scientific background or a medical background." For her part, Brenda Lein of ACT UP/Golden Gate was dismayed by how easily manipulated the breast cancer activists could be at first, in the absence of the sort of expertise about drug development that AIDS activists had acquired. She described attending an early meeting between cancer activists and pharmaceutical company representatives where the drug company scientists "were just snowing them over left and right—blatantly lying to them: 'No, you can't have access to protocols,' 'Oh, we don't share that information, it's confidential.'" Lein worried, in 1993, about breast cancer activists "putting the cart before the horse": they appeared to be imitating the outward forms of AIDS treatment activism—"The AIDS folks have community advisory boards, we want that too!"—without first developing the knowledge base that had made those institutions meaningful. But increasingly, breast cancer activists were stepping back to learn the science and to educate themselves about clinical trial design—even to attend oncology sessions at the ACTG meetings.
Of course, it would be rash to assume that AIDS activism has created an automatic receptiveness on the part of scientists or doctors to health movements of this sort, and that the next round of activists can simply step up to the counter and claim their rewards. A more likely scenario is that AIDS activism will usher in a new wave of democratization struggles in the biomedical sciences and health care—struggles that may be just as hard fought as those of the past fifteen years. It is worth remembering, too, how difficult this sort of activism is to sustain: organizing a social movement is arduous enough without having to learn oncology in your spare time. In 1994, Mark Harrington was happy that his term on the ACTG's Community Constituency Group
had expired; he cited the "incredible amount of work" involved in preparing for scientific meetings: "There are enormous faxes and Federal Express boxes, and there are four to six conference calls a month." More profoundly, one of the challenges for any movement that would follow in the footsteps of AIDS treatment activism is how to sustain, over an extended period, what Harrington describes as "a lasting culture of information, advocacy, intervention, and resistance." Asked Harrington: "How can we foster this culture that is probably going to need to continue for longer than all of us may? This becomes a very important issue, and one that we didn't consider in the first few years. …"
Expertise and Democracy
"If citizens ought to be empowered to participate in determining their society's basic structure," writes Richard Sclove, "and technologies are an important species of social structure, it follows that technological design and practice should be democratized." There is a growing, international body of literature suggesting means by which science and technology can be brought further under popular control—studies of "science shops" that bring researchers into collaboration with citizens, "science courts" that invite laypeople to pass judgment on political controversies with scientific dimensions, and citizen boards to assess technological risks. Yet there is also good cause to recognize the extraordinary difficulty of eradicating hierarchies founded on knowledge-possession—hierarchies that can cut across social movements just as easily as they can divide "laypeople" from "experts." This, too, is a dilemma that will confront future groups that seek to democratize biomedical knowledge-making or other domains of science and technology.
In the goals of democratizing science and building "lay expertise," at least three distinct difficulties are interwoven. First, the practices of science by their nature presuppose specialization: no one can know everything; everyone must therefore acknowledge that others speak with authority—at least some others, some of the time. To participate in science, then, means inevitably to cede authority over most of its domains at the same time that one constitutes expertise over a particular one. Even AIDS treatment activists tend to specialize among themselves and construct a division of expert labor: some study vaccine development, others follow immunology, still others "adopt" a particular
drug and track its development. In this way, activists become essential to one another, since all must trust that the others have done their homework and know what they're talking about. Understood in these terms, "democratization" of science is inevitably a partial and uneven process and one that, ironically, proceeds hand in hand with the consolidation of new relationships of trust and authority.
The second difficulty confronted by social movements that seek to democratize the practices of knowledge-making is that there may be tension between participation in the construction of scientific knowledge and the requirements of movement-building. While inarguably successful in important ways and according to various criteria, the shift "inward" and "backward" by key treatment activist groups has made it harder for them to frame issues for the media or a broader public, to recruit new members, and to maintain a broad-based and socially diverse movement. The ways of representing natural and social reality that activists develop in their role as "lay experts" may differ significantly from the representations that they elaborate in street demonstrations and other, more conventional, activist venues. And the tactics of "expertification" that have ensured the activists' credibility before the research establishment may be, at least to some degree, in conflict with the goal of ensuring movement leaders' credibility in the eyes of the communities that the movement seeks to represent.
Issues of professionalization and hierarchy—and risks of cooptation—are not, of course, unique to AIDS activism. Other movements, such as the environmental movement, have struggled over "insider" and "outsider" strategies and the relative merits of professionalized activism when interacting with credentialed experts. Few are the cases, however, of movements so fundamentally dependent on their adversaries as is the AIDS movement, and it is this binding of need and antagonism that has accentuated the complexities of the interaction and brought them into sharper relief. The experience of AIDS treatment activism suggests that confronting highly technical domains of science can have a wide range of effects upon the internal and external dynamics of a social movement. Even when activists deliberately erode the boundaries between "science" and "politics," they may find that the tactics and tools that facilitate their engagement with scientific elites are at variance with other movement goals and may distance them from some of their "lay" compatriots who perceive them then as "experts." Such developments can lead to profound
internal struggles to determine a movement's very identity, as well as how it communicates its messages and what it sets out to accomplish.
The third problem is that knowledge hierarchies are rarely "accidental" in their origins: They tend both to build upon and reinforce social cleavages based on other markers of difference—class, formal education, race, gender, sexuality, and nationality. When the power of expert knowledge within a social movement overlaps with other systems of hierarchy, the results can be problematic for the movement, even if the new experts work entirely in good faith for the benefit of all. The interweaving of expertise with diverse forms of power is evident to those who become positioned on the margins. It is apparent, in another way, to "border people"—as Garance Franke-Ruta (a white woman) refers to the position of herself and Moisés Agosto (a Puerto Rican gay man) inside TAG, an organization that is predominantly composed of white gay men. As an "outsider" who believed in the importance of treatment activism for communities of color, Agosto found he had to fight his way into a position of access and influence—to break into the tight circles that the first generation of treatment activists had constructed between themselves, government health officials, academic researchers, and pharmaceutical companies. Wearing two hats, Agosto took a staff position with the National Minority AIDS Council but remained active with TAG, becoming a member of its board. However, once he found himself appointed to the National Task Force on AIDS Drug Development, Agosto confronted an ironic challenge from the grassroots: "People have come to me and said, 'Well, we lost you. You're on the inside now with the Task Force.'"
Agosto rightly observes that his options have not been foreclosed: "I can [still] go and scream in the streets if I feel I have to." But he cannot entirely escape the metamorphosis of identity that follows from engagements with power and knowledge. The fact that various dimensions of social hierarchy, such as those constructed in relation to racial difference, crisscross and intertwine with the politics of expertise only complicates the story and imbues it with added poignancy. These considerations suggest the true dimensions of the problem: it is unlikely that knowledge-making practices can be substantially democratized, except when efforts to do so are carried out in conjunction with other social struggles that challenge other, entrenched systems of domination.
This broadening of perspectives would set heady goals for a movement more immediately concerned with the concrete business of saving
lives. But even the most "professionalized," "expert" activists pursuing "insider" strategies have seen precisely these deeper purposes as the motivation for their efforts. "If AIDS activists ever leave any legacy other than their own bodies," wrote Gregg Gonsalves and Mark Harrington in 1992, "it will be, among other things, a movement for national health care and the democratization of research." Certainly the genuine progress that has been made in the struggle to democratize biomedicine is not negated by the failure to realize it in full, any more than the medical advances in the fight to keep people with AIDS alive are belied by the failure to eradicate the epidemic. In the meantime, the struggle continues on multiple fronts, and AIDS activists' strategies for engaging with medical science continue to provoke controversy and provide inspiration.