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.