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.