"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."