AIDS activism – citizens, science and citizen science

I was pondering “co-production” as a research plan aim recently, and it strikes me that the whole idea is often more developed in biomedical research than some of the other areas where it has become fashionable. Patient activism has a lot to do with this, and the early history of the AIDS epidemic is informative there – especially as analysed by Stephen Epstein in the 1980s and early 90s. This is a review of his book from that time.

When Martin Delaney had chronic hepatitis, he agreed to take part in a clinical trial of a new drug. He ended up cured, but with drug-induced damage to the nerves in his feet. The trial was halted because of the side effects. But Delaney thought it a fair deal.

Some years later, as an Aids activist in San Francisco, he was one of the strongest advocates of involving patients in the design of trials for possible anti-HIV drugs. Faced with a whole battery of mediocre drugs, some officially sanctioned, some illicit, he wanted patients, not doctors, to judge what risks were worth running.

Through the 1980s, Delaney, and many others like him, changed the culture of drug testing in the United States, in both the Food and Drug Administration and the National Institutes of Health. More than that, they went a long way to establishing new conditions for producing knowledge – about anti-Aids drugs, at least – which took account of the interests and ideas of patients, as well as scientists and clinicians.

Steven Epstein’s book is a sociologically informed history of the development of the science of Aids, and the way it has been partly shaped by Aids activism in the US. His narrative, influenced by recent accounts of scientific practice and by ideas from the sociology of social movements, offers a very rewarding account of how a large range of actors have fought to make their views heard, and tried to understand one another, all the while caught up in the overriding struggle against a new disease.

The book is in two parts. The first – on what he calls the politics of causation – relates the creation of the virology of Aids, as ideas about what might cause the condition crystallised around a retrovirus identified in France and the US. The second – the politics of treatment – concerns the controversies over drug regulation and clinical trials. Together, they offer both an important contribution to the history of the epidemic and an invitation to reflect on the role actors from outside established science may play in research.

The first story is in some ways more straightforward. Epstein makes skilful use of the work of writers like Harry Collins and Bruno Latour to show why it was so difficult to bring the controversy over the role of HIV as the putative cause of Aids to closure after its pathogenicity was questioned by the eminent Californian virologist Peter Duesberg. But his reliably critical eye for the force of the arguments offered by both sides in the ensuing debate makes this part of the book read more like a conventional narrative history than the story of clinical trials and tribulations that follow. Epstein’s sympathies, like those of the vast majority of scientists and gay activists, lie pretty firmly with the HIV hypothesis.

Trials are a different matter. What gets tested, when, and how is, perhaps, inherently more negotiable than the cause or causes of the disease, and the negotiations were long and hard. Like other recent studies, this one shows that public understanding of the most complex science is no problem when the motivation is there, and that nothing motivates like a life-threatening disease. But it goes some way beyond them in showing how such understanding can be turned into public participation in the research process.

There are many twists and turns, and many contradictions, in the relationships between the Aids activists and the researchers. Who, exactly, did the activists represent? How expert did they have to become to deal with statisticians, doctors and officials? And what were the limits of their influence on the science? Conclusions must be tentative – there is, after all, no effective treatment yet, despite renewed fanfare over combination therapies. Two things stand out from Epstein’s account. One is that the activists, however committed they were at the outset to a demonstrative politics of street theatre and conference interventions, became more effective scientifically as they became more knowledgeable. But this both made them more likely to adopt conventional scientific standards of rigour and created fresh divisions within the activist community. The second is that they did shift opinion about trial protocols, management and recruitment, in ways that will have a lasting effect.

What is less clear is how far activist influence has reached into the research that generates new drug candidates, as opposed to testing them. Epstein describes the molecular biologists as more receptive, on the whole, to the activists’ probing inquiries than the clinical researchers were; happier to talk about what they do and why. But as they talk, they tend to make a good case for doing basic research on the virus the best way they know how. Whether there is scope for an effective contribution to steering that research from those seeking a handle on their disease remains to be seen. But the demand is likely to grow, in relation to this and other diseases. The politics of breast cancer in the US has already been strongly influenced by Aids activism, though the main effect has been a massive increase in spending rather than a change in the character of the research. Other conditions are sure to follow. Anyone who needs to understand why should read this scrupulous and illuminating study. (1997)

Impure Science: Aids, activism and the politics of knowledge. Steven Epstein. University of California Press.


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