Steven Epstein

The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials

In an unusual instance of lay participation in biomedical research, U.S. AIDS treatment activists have constituted themselves as credible participants in the process of knowledge construction, thereby bringing about changes in the epistemic practices of biomedical research. This article examines the mechanisms or tactics by which these lay activists have constructed their credibility in the eyes of AIDS researchers and government officials. It considers the inwlications of such interventions for the conduct of medical research; examines some of the ironies, tensions, and limitations in the process; and argues for the importance of studying social movements that engage with expert knowledge.

Bodily Differences and Collective Identities: the Politics of Gender and Race in Biomedical Research in the United States

As a consequence of recent changes, health research policies in the United States mandate the inclusion of women and members of racial and ethnic minority groups as experimental subjects in biomedical research. This article analyzes debates that underlie these policies and that concern the medical management of bodies, groups, identities and differences. Much of the uncertainty surrounding these new policies reflects the fact that researchers, physicians, policy makers and health advocates have adopted competing, and often murky, understandings of the nature of sex, gender, racial and ethnic differences, and of the relation of the biological to the social in the manifestation of bodily illness.

Activism, drug regulation, and the politics of therapeutic evaluation in the AIDS era: A case study of ddC and the 'surrogate markers' debate

This paper presents an extended case study to demonstrate that the interpretation of clinical trials of antiviral AIDS drugs is significantly shaped by a widely dispersed allocation of scientific credibility. Specifically, the participation of AIDS activists in claims-making about AIDS trials and AIDS drugs complicates the politics of therapeutic evaluation, even as it challenges the monopolization of credibility by credentialed researchers. The paper tracks the social construction of belief about the efficacy of the combination therapy of AZT and ddC, between 1990 and 1995 in the United States. By intervening simultaneously in interpretative debates about the results of the clinical trials of this therapy and in methodological debates about how efficacy might best be measured in such trials, activists have helped to shape what is believed to be known about these drugs.

Culture and Science/Technology: Rethinking Knowledge, Power, Materiality, and Nature

Sociologists of science and technology mostly have not engaged directly with the sociology of culture, and most sociologists of culture have been slow to extract the implications for their own work of studies of scientific authority and technological production. In this article, the author analyzes how sociologists of science and technology in fact have performed cultural analyses. The author argues that recent moves to extend studies of science and technology “outward” beyond formal scientific settings have created new possibilities for interchange with the sociology of culture, particularly around studies of material culture, classification, cultural cartography, scientific citizenship, epistemic cultures, and civic epistemologies. The author concludes that the sociology of science and technology holds important lessons for sociologists of culture because of its focus on a key source of cultural authority, its attention to material objects, and its commitment to rethinking divides between the instrumental and the expressive and between nature and culture.

Immigrant sexual citizenship: intersectional templates among Mexican gay immigrants to the USA

Existing literature on sexual citizenship has emphasized the sexuality-related claims of de jure citizens of nation-states, generally ignoring immigrants. Conversely, the literature on immigration rarely attends to the salience of sexual issues in understanding the social incorporation of migrants. This article seeks to fill the gap by theorizing and analyzing immigrant sexual citizenship. While some scholars of sexual citizenship have focused on the rights and recognition granted formally by the nation-state and others have stressed more diffuse, cultural perceptions of community and local belonging, we argue that the lived experiences of immigrant sexual citizenship call for multiscalar scrutiny of templates and practices of citizenship that bridge national policies with local connections. Analysis of ethnographic data from a study of 76 Mexican gay and bisexual male immigrants to San Diego, California, reveals the specific citizenship templates that these men encounter as they negotiate their intersecting social statuses as gay/bisexual and as immigrants (legal or undocumented); these include an ‘asylum’ template, a ‘rights’ template, and a ‘local attachments’ template. However, the complications of their intersecting identities constrain their capacity to claim immigrant sexual citizenship. The study underscores the importance of both intersectional and multiscalar approaches in research on citizenship as social practice.

Misguided boundary work in studies of expertise: Time to return to the evidence

Do modern, expert-driven societies face the grave threat of ‘technological populism’? Must we construct a sharp boundary between the ‘technical’ and the ‘political’ to ward off this risk? Collins, Weinel, and Evans’ arguments in ‘The Politics and Policy of the Third Wave’ (Collins et al. 2010) convince me of neither claim. That article summarized the agenda that was set forth initially by Collins and Evans in a widely cited essay in the journal Social Studies of Science and was developed in much greater detail in the same authors’ thought-provoking book, Rethinking Expertise (Collins and Evans 2002, 2007). Collins and Evans’ work has been influential and usefully controversial, both inside and outside of the intellectual community of science and technology studies (STS), but it rests on, and reproduces, misunderstandings about the implications of political controversies surrounding science and technology.1 Theirs is an attempt to develop a sophisticated theory of expertise, one that demands deference to experts at proper moments, but that also opens up membership in the category by granting legitimacy to some of those who lack formal credentials – for example, activists who acquire the capacity to speak about and evaluate scientific developments in a knowledgeable way. Collins et al. (2010) insist on a clear divide between a ‘political phase’ of decision-making about science and technology, within which everyone might in principle have a say, and a ‘technical phase’, within which only the experts should be allowed to speak (but including the uncredentialed experts). Thus while the authors expand the bounds of expertise to a limited degree, their goal in the end is to narrow the grounds on which expert judgment might be challenged. In that regard, while the authors invoke much recent STS scholarship on the acquisition of expert competence by lay actors, their normative agenda is out of sync with most current scholarship in the field. More importantly, I will argue that their insistence on a clear divide between a ‘political phase’ and a ‘technical phase’ of decision-making represents a misreading of the scholarship that informs their work. Before proceeding further, I should note that in the original ‘Third Wave’ texts (though not in the Critical Policy Studies article), my own study of AIDS research and AIDS activism (Epstein 1996) figured prominently as the source of an especially generative example. Collins and Evans refer frequently to ‘Epstein’s AIDS activists’ as emblematic of the sort of lay actors who can potentially cross over and become genuine experts of a sort.

'For men arousal is orientation': bodily truthing, technosexual scripts, and the materialization of sexualities through the phallometric test

We trace the history of the phallometric test – which measures erections of men exposed to visual erotic stimuli to characterize sexualities – in order to account for its functioning as a ‘truthing technology’. On the basis of a content analysis of 410 key scientific journal article abstracts, we argue that since its invention in Czechoslovakia in the 1950s, phallometry has been employed within three distinct assemblages: as a test of predominance of sexual desire, as a test for therapeutic efficacy, and as a threshold test of sexual risk. Drawing on works of theorists of materialization and proponents of script theory, we argue that within each assemblage phallometric testing materializes male desire and renders it measurable via a ‘technosexual script’. We consider the performative effects of phallometry in establishing scientific conceptions of normal and abnormal sexualities. At the same time, through attention to debates among practitioners and broader controversies surrounding the employment of phallometry, we examine the limits of researchers’ abilities to establish the broader credibility of the test and capture the phenomenon of sexual desire. This analysis contributes to the study of truthing technologies (or ‘truth machines’) as a class, while also helping to build bridges between science and technology studies and sexuality studies.

Targeting the State: Risks, Benefits, and Strategic Dilemmas of Recent LGBT Health Advocacy

During the 1990s in the United States, lesbian, gay, bisexual, and transgender (LGBT) health advocates undertook a significant strategic experiment that was fraught with some peril: They turned to the state in an attempt to institutionalize a broad-based health agenda. What I call here “state-centered” LGBT health politics involves concerted efforts by activists and researchers to make demands on the state for inclusion and incorporation—demands to institutionalize LGBT (or, more often, just lesbian and gay) health as a formal concern of public health and health research bureaucracies. At the crux of state-centered advocacy is the claim that lesbians, gay men, bisexuals, and transgendered persons have distinctive health concerns and would benefit from research that finds them, counts them, studies them, and compares them with others. Thus the state-centered approach takes fixed categories of sexual identity as the foundation of a health promotion and biomedical research strategy. Although state-centered politics has been conducted in relation to the federal, state, and local government levels in the United States, I emphasize what I take to be the most significant recent target: the U.S. Department of Health and Human Services (DHHS) and its key, health-related component agencies, such as the National Institutes of Health (NIH).

Reframing Aids, Retooling Scholarship

Three excellent recent books attest to how much remains to be understood about the AIDS epidemic, and even about its most well-studied years, the 1980s and 1990s. While varying by discipline and approach, these books converge around a common set of preoccupations: the potency of historical legacies, the vigor as well as the fragility of counterpublics, the tensions between individualizing and collectivizing responses to disaster, and the social management of despair. Yet despite their virtues, these books also raise questions about the limitations of accounts that isolate HIV/AIDS as a distinct scholarly topic.

Book ReviewsDisciplining Reproduction: Modernity, American Life Sciences, and "the Problems of Sex."By Adele E. Clarke. Berkeley: University of California Press, 1998. Pp. xvii + 421.

questions that the sexologists thought about in quite different ways or did not think about at all (here is the importance of the “absence” to postmodernists or why our ancestors did not write about topics that consume the narcissistic present). This absence of relation between the now and the then and the hegemonic ways in which the now makes use of the then is what most impresses me about these two volumes. The essays themselves are nearly all thoughtful and carefully researched, but they are very contemporaneous, in some cases postmodernist in their interpretative impulses. They often do not attempt to make the documents of the past understandable in their own terms. Why would sexologists write in the way they did? Why would they generate these strange categories? Who were the people who came forward and talked to them? Why is the case history the storytelling document of choice? The cutting up of the past into text bites works against the essayists’ interests in capturing the wholeness of the social and cultural situation that produced this kind of thought. Even with these strictures, these volumes do substantially advance our understanding of the complexities and contradictions of the sexological tradition. And they give it a place in the history and the sociology of science.