Part One: The Politics of Causation
Who could doubt that HIV, the human immunodeficiency virus, causes AIDS? That proposition has been the accepted scientific wisdom since the mid-1980s, after several groups of researchers reported finding a previously unknown virus in the blood of AIDS patients. It is a conclusion endorsed by preeminent virologists, immunologists, epidemiologists, and clinicians; by the World Health Organization and the Centers for Disease Control and Prevention (CDC); and by prominent AIDS service and advocacy organizations. In the mainstream media, HIV is casually referred to as the "AIDS virus"; among insiders, AIDS is increasingly understood as simply the end stage of "HIV disease." The claim that HIV is the etiological agent in the Acquired Immunodeficiency Syndrome is the guiding assumption behind billion-dollar programs for HIV antibody testing, antiviral drug development and treatment, and vaccine research around the world. It is the cornerstone of "what science knows about AIDS."
Yet the search for the cause of AIDS took many twists and turns before settling on HIV. Indeed, the notion that AIDS might be caused by a previously unknown virus was initially a relatively unpopular one. Beginning from a zero point of near-total uncertainty, competing groups of scientific claims-makers, under the watchful gaze of interested segments of the public who sought to establish "ownership" over the epidemic, advanced various hypotheses. Then, between 1984 and 1986, a bandwagon formed behind the proposal that a particular virus, eventually named HIV, was the causal agent.
Nevertheless, in the late 1980s and early 1990s, some years after the discovery of HIV and the large-scale implementation of social policy based on it, the markers of controversy abounded. Symptomatic were debates about "cofactors" needed to cause disease, investigations into the mysteries of "pathogenesis" (Just how does HIV cause disease?), and scares about cases of an "AIDS-like" illness in HIV-negative people. Most astounding of all have been the claims of Peter Duesberg, a molecular biologist at the University of California at Berkeley and a member of the elite National Academy of Sciences. Beginning in 1987 in an article in Cancer Research and subsequently in articles in publications such as Science and the Proceedings of the National Academy of Sciences , Duesberg has maintained that HIV is a harmless passenger in the AIDS epidemic, "just the most common among the occupational viral infections of AIDS patients and those at risk for AIDS, rather than the cause of AIDS." He argues that there is no solid evidence establishing a causal role for the virus and, furthermore, that a retrovirus such as HIV simply cannot cause a syndrome like AIDS. Instead, Duesberg's current alternative hypothesis is that "the American AIDS epidemic is a subset of the drug epidemic," attributable primarily to long-term consumption of recreational drugs and secondarily to what Duesberg calls "AIDS by prescription"—the toxic effects of the medication azidothymidine (AZT), widely prescribed to fight HIV infection.
Duesberg is only one of a number of researchers, doctors, and activists who have cast doubt on the "HIV hypothesis," but he has attracted by far the most attention. Duesberg's claims have prompted dozens of articles and communications in scientific journals and several hundred articles and letters in the mainstream English-language press. In 1994, Science , one of the most important general science journals in the world, devoted eight pages to the "Duesberg phenomenon." The story has found its way into Naturwissenschaften and the Gaceta Médica de México; the Los Angeles Times , the New York Times , and the Times of London; National Public Radio and Penthouse;[ 132] the position papers of an AIDS advocacy organization and the columns of a pop music magazine; and perhaps every gay and lesbian news source in the United States. Reporters are quick to stress Duesberg's impressive credentials. He is frequently cast as a "heretic" who, like Galileo, has been excommunicated by dogmatic proponents of "orthodoxy" less interested in truth than in their hold on the faithful. And reporters are often quick to mention that Duesberg has declared himself in principle "quite happy to [be]
publicly injected with HIV." Many scientists who think Duesberg is dead wrong are made apoplectic by the mention of his name. "I'm so tired of hearing the Peter Duesberg crap about HIV," said Donald Francis, a prominent AIDS researcher formerly with the CDC, to an audience of one thousand at a 1992 public forum on AIDS in San Francisco. "News reporters looking for an AIDS angle should look for another story…. The disease is caused by the virus, dammit, and the press should understand that."
To describe the construction of facts such as "HIV causes AIDS," sociologists of scientific knowledge have adopted the phrase "black box." As Bruno Latour explains, the concept is borrowed from cybernetics, where black boxes are used in diagrams as a quick way of alluding to some complex process or piece of machinery: if it's not necessary to get into the details, one just draws the box and shows the input and the output. Then no one has to worry about what goes on inside the box itself, and the nonexpert may never even realize just how messy the inside really is. Scientific facts are similar: masked beneath their hard exterior is an entire social history of actions and decisions, experiments and arguments, claims and counterclaims—often enough, a disorderly history of contingency, controversy, and uncertainty.
Scientists strive to "close" black boxes: they take observations ("The radioactive isotope count that indicates the presence of reverse transcriptase, an enzyme associated with retroviruses, rises over time in specially prepared lymph tissue from a person with an illness believed to be AIDS-related"), present them as discoveries ("A novel human retrovirus has been grown in T-lymphocytes of AIDS patients"), and turn them into claims ("The probable cause of AIDS has been found") which are accepted by others ("HIV, the putative cause of AIDS,…") and may eventually become facts ("HIV, the virus that causes AIDS,…") and, finally, common knowledge , too obvious even to merit a footnote. Fact-making—the process of closing a black box—is successful when contingency is forgotten, controversy is smoothed over, and uncertainty is bracketed. Before a black box has been closed, it remains possible to glimpse human actors performing various kinds of work—examining and interpreting, inventing and guessing, persuading and debating. Once the fact-making process is complete and the relevant controversies are closed, human agency fades from view; and the farther one is from the research front, the harder it is to catch glimpses of underlying uncertainties. It then becomes difficult to ask, Was the examination accurate? Was the interpretation
defensible? Was the persuasion logical? Those who want to challenge a claim that has been accepted as fact must effectively "reopen" the black box.
What are the dynamics of fact making when science is closely scrutinized by attentive spectators? What are the processes by which black boxes are closed and reopened when scientific arguments become the stuff of news reports and street conversations? There are examples of important controversies in science—the debate over continental drift is one —that barely get any airplay in the "outside" world. AIDS is something else again. With millions of people around the world believed to be infected with HIV, the human stake in the causation controversy is gigantic, immediate, and inescapable. It should therefore come as no surprise that the cast of characters in AIDS debates is diverse. A full-fledged inquiry into the controversy immediately bursts us out of the "scientific field" narrowly construed. It forces an examination of the ensemble of social actors, with varying and conflicting social interests, who at different points have struggled to assert credible knowledge about the epidemic or to assert their capability to weigh and evaluate such knowledge.
At a different level, the causation controversy reflects a struggle for "ownership of" and "democracy within" science. An agenda has emerged, well expressed in the words of writer Jad Adams, one of the "HIV dissidents" and author of AIDS: The HIV Myth: "Ultimately, expert advice must be evaluated by the people who are not experts—politicians, journalists, and the public. This is part of democratic life and a scientist has no more right to exclusion from public scrutiny than a treasury official." In the intervention of laypeople in debates about the causes of AIDS, claims about causes are interwoven with claims about the very right to intervene. It makes sense that the opponents of the orthodox position on causation so frequently take aim at what they call the premature "rush to judgment" in 1984 on the question of causation: from their perspective, this moment represented the stifling of democratic openness of opinion and the authoritarian imposition of closure. In many ways the debate has become a debate about closure —that is, a debate about when and how scientific controversies end. But concerns about closure in this case break down into a number of important dimensions: epistemological (When is causation proven?), methodological (How should rival theories be weighed and compared?), empirical (Was closure arrived at too early? What conclusions did the evidence permit in 1984 and what conclusions are
reasonable today?), and most notably, political (Who decides? Which social actors are qualified or entitled to participate in the process of establishing the scientific knowledge about AIDS?). In other words, the controversies about what causes AIDS are simultaneously controversies about scientific controversies and how they should be adjudicated—controversies about power and responsibility, about expertise and the right to speak. As frames of knowledge and belief about AIDS have become fixed in place, a range of social actors have engaged in credibility struggles to defend, refine, subvert, overturn, or reconstruct those frames.
Conceived as a series of multilateral credibility struggles, the controversy surrounding the causation of AIDS raises a number of important questions that I consider in the chapters that make up part one:
How did the hypothesis that was initially considered relatively unlikely—that AIDS is caused by a previously unknown virus—come to supplant more popular alternatives?
What were the processes by which the HIV hypothesis, once formulated, became "black-boxed" and achieved the status of fact—among doctors and scientists, in the mass media, in gay communities, and in the AIDS movement? To what extent was there dissent, and how was it manifested?
How is it that Duesberg, initially presenting views that had minimal credibility among established AIDS researchers and mainstream AIDS organizations, has been able to attract allies and adherents not just among sectors of the AIDS movement but, eventually, within legitimate scientific circles as well?
How has Duesberg been able to accomplish this when others with somewhat similar views have been marginalized?
My reconstruction of the history of claims-making necessarily ranges widely. It is not just that the controversy extends across a range of scientific disciplines—virology, epidemiology, immunology, molecular biology, pharmacology, toxicology, and clinical medicine. The controversy also spins off into a series of more general debates about the nature of disease and the methods of scientific reasoning: Do diseases typically have a single cause or multiple causes? Are established rules of scientific proof inviolable, or are they subject to revision as scientific knowledge changes and technologies improve? When anomalies are found that appear to falsify an existing hypothesis, when should the
hypothesis be scrapped and when is it proper scientific procedure to work with the hypothesis, tinkering with it so that it can account for the anomalies? Does normal, peer-reviewed "establishment science" produce the best results in the end, or do the truly revolutionary findings come from the mavericks and iconoclasts who challenge, or work outside of, the system?
And finally, as the controversy has expanded from one social arena to the next, it has never been articulated in a vacuum, separate from other social concerns. On the contrary, a variety of apparently tangential beliefs and values have spilled over into (indeed, partially constitute) the AIDS etiology debates. These beliefs and values include divergent attitudes toward homosexuality, promiscuity, and drug use; inferences that link the causes or origins of a disease with theories of social blame; and assumptions about whether illnesses are attributable primarily to microbes, lifestyles, or societies. In short, the AIDS causation controversy is inexplicable outside of the larger context of how AIDS has been constructed as a social problem against the backdrop of contested attitudes about scientific medicine.