“The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials” (1995), by Steven Epstein

On 1 October 1995, Steven Epstein published “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials,” hereafter “Lay Expertise,” in the journal Science, Technology, & Human Values. In the article, Epstein shows how particular activists in the 1980s helped reform government-run clinical trials for people with acquired immunodeficiency syndrome, or AIDS. Those activists did that work at a time when AIDS was widespread among communities of gay men, and there were no treatments available to combat the disease. Epstein documents how AIDS activists gained credibility in the eyes of the scientific establishment through specific tactics of engagement with experts. “Lay Expertise” laid a foundation for understanding how AIDS movement activism transformed the field of biomedicine, and paved the way for additional research on illness-related social movements, such as those related to infertility and embryonic stem cell research.

1. Background and Context
2. A Roadmap of "Lay Expertise"
3. The Content of "Lay Expertise"
4. The Impact of "Lay Expertise"

Background and Context

AIDS is a chronic, life-threatening disease of the immune system that if left untreated, can be fatal. AIDS is caused by infection with the human immunodeficiency virus, or HIV. HIV damages the immune system and interferes with the body’s ability to fight infection and clear other diseases, often leading to progression to AIDS when left untreated. HIV is a sexually transmitted infection, or STI, that can also be transmitted through contact with infected blood as well as through intravenous drug use via the sharing of needles. The virus may also spread from mother to child during pregnancy, childbirth, or breastfeeding. Mothers who are HIV-positive and receive treatment for the infection during pregnancy can significantly lower the risk of transmission to their babies. If an HIV-positive individual remains untreated, it may take up to eight to ten years before HIV weakens the immune system to the point of progression to AIDS. Access to antiviral medications have decreased deaths from AIDS across the world, and as of 2024 most people with HIV in the United States do not develop AIDS.   

The earliest reports about the AIDS epidemic in the US focused on homosexual men. On 5 June 1981, the US Centers for Disease Control and Prevention published a report in the Morbidity & Mortality Weekly Report, indicating that five previously healthy homosexual men had become infected with Pneumocystis carinii, known as Pneumocystis jirovecii as of 2024. Pneumocystis jirovecii is a type of fungus that can cause pneumonia, especially in individuals with severely compromised immune systems. The following year, on 11 May 1982, The New York Times published an article describing a disorder that appeared primarily to affect homosexuals, detailing that of 355 people with the disease, 136 of those individuals had died. The condition, then called gay-related immunodeficiency, or GRID, had by then amassed public attention. Because it affected many gay men, stigma developed, and people started to associate the disease with homosexuality, despite a growing number of heterosexual women who also started to present with the disease.

Epstein wrote “Lay Expertise” after obtaining a doctorate in sociology in 1993 from the University of California-Berkeley in Berkeley, California. He wrote the article while working in a postdoctoral fellowship in the Science Studies Program at the University of California-San Diego, in San Diego, California, during the years 1993 to 1994. Epstein presented an early version of the work at the annual meeting of the Society for Social Studies of Science held at Purdue University in West Lafayette, Indiana, from 19 November to 21 November 1993. 

Epstein states that his purpose is to show how activist movements, in particular the AIDS activist movement, gain credibility and can in fact become key players in the construction of scientific knowledge, and that activist participants can provoke change in both the actual practice of scientific research and in the therapeutic administration of medical care. Furthermore, Epstein states that he specifically wanted to focus on treatment activists who intervened into the design, conduct, and interpretation of clinical trials used to test the safety and efficacy of drugs for AIDS patients.

A Roadmap of “Lay Expertise”

Epstein divides “Lay Expertise” into six sections. “Medical Science, Social Movements, and the Study of Credibility” includes a theoretical discussion of credibility as it relates to the rise of the AIDS social movement. “The Rise of the AIDS Movement” includes explanations of characteristics of the AIDS movement. “AIDS Treatment Activism” involves discussion of the particular activist groups, such as Gay Men’s Health Crisis and ACT UP, on which Epstein focuses most of his attention. In “Credibility Tactics,” he outlines the strategies by which AIDS activists asserted authority within the biomedical research domain. In “Participatory Knowledge Making in Biomedicine,” Epstein explains that AIDS activists’ adoption of scientific expertise led to changes in the management of clinical trials. Lastly, “The Broader Impact of AIDS Treatment Activism” closes the work with Epstein extending takeaways from the study toward other instances of illness-related social movements.

The Content of “Lay Expertise”

In the first section, “Medical Science, Social Movements, and the Study of Credibility,” Epstein explains that the medical establishment’s failure to provide a timely response to the AIDS crisis in the 1980s diminished the credibility of the field of medicine. As a result, there became room for dissident voices outside of established medical experts. Epstein defines scientific credibility as the capacity of people making scientific claims to garner support for their claims, to make their arguments legitimate and authoritative, and to present themselves as the sort of people who can give voice to science. Epstein states that, due to the numerous ways that different entities made meaning of and tried to explain AIDS and the impact it has had on society, scientists from multiple disciplines often competed in the development of credible knowledge claims about the crisis. Furthermore, the AIDS epidemic brought forth many different avenues to the establishment of credibility, as well as a diversity of players who could be seen as credible. Epstein claims that analysis of the science of AIDS thus must not center the claims of scientists and medical professionals, as the very nature of the AIDS epidemic demands attention to power dynamics that dictate how people construct and make sense of knowledge regarding the disease.

In the second section, “The Rise of the AIDS Movement,” Epstein briefly discusses other social movements that bear relevance to the study of the AIDS activist movement, such as the movements for political rights for women, for lesbian and gay communities, and for racial and ethnic minorities. While those other movements bear similarities in how activists mobilized for change, Epstein asserts the AIDS movement is much broader in that it is a movement where the actual people suffering from the disease mobilized themselves as activist-experts. Epstein mentions other instances in which that has happened similarly, such as engagements of cancer activists in the 1970s and individuals who were a part of the feminist health movement. He further claims that the distinct social features of AIDS have shaped the character of public engagement with science, particularly in its framing as a disease that affects only certain types of people with particular social behaviors. Epstein argues that because of group configurations brought about through the gay and lesbian social movement, there were already social structures in place to meet a novel threat. He argues for an understanding of the AIDS movement in relation to the gay and lesbian movement, in that the latter set the foundation for the former.

In the third section, “AIDS Treatment Activism,” Epstein specifically focuses on a type of activism that revolves around eliciting treatment for the disease, often developed as a principal division of the activist organizations that grew out of the AIDS movement. Epstein highlights subcommittees of the AIDS Coalition to Unleash Power, or ACT UP, as well as groups such as the San Francisco-based Project Inform and publications such as AIDS Treatment News and Treatment Issues, published by the Gay Men’s Health Crisis, an organization founded by author and activist Larry Kramer and others in 1982. The author mentions how activists demanded rapid approval of experimental treatments and established buyers’ clubs, a type of organization that imported and distributed unapproved treatments for AIDS.

Further on in the third section, Epstein discusses activists’ shift in focus from advocating for faster approval of drugs to advocating for more of those drugs, in general. Such a shift meant instead of targeting the Food and Drug Administration, or FDA, which presided over drug approval, AIDS activists shifted focus to the organizations responsible for approving the manufacture and distribution of antiviral drugs, such as the National Institutes of Health, or NIH, and specifically, the AIDS Clinical Trials Group of the National Institute of Allergy and Infectious Diseases. Activists ensured agency representatives paid attention to their demands through large-scale protests involving more than 1,000 people, one in 1988 at FDA headquarters and another in 1990 at NIH headquarters. While those demonstrations were effective at helping raise awareness of the AIDS crisis in general, Epstein explains, to effect real change in the biomedical sphere treatment activists needed to transform themselves into a hybrid of activist and expert able to speak credibly in the same scientific language as AIDS researchers.

In the fourth section, “Credibility Tactics,” Epstein lays out four distinct tactics that treatment activists employed that established their scientific knowledge and credibility in the eyes of the biomedical establishment. First, activists acquired a basic familiarity with the language of biomedicine to access the field’s institutions. Second, AIDS treatment activists worked to position themselves as the voice of all people with AIDS or HIV infection. Third, treatment activists linked political arguments to arguments about the nature of scientific knowledge. For example, responding to the fact that clinical trial subject groups consisted primarily of middle-class white men, activists argued that clinical trial subjects must be representative of the entire population of individuals who suffer from the disease. The fourth credibility tactic involved AIDS treatment activists taking sides in pre-existing debates over how clinical research should be performed. In that vein, activists promoted a practical approach, one rooted in the needs and experiences of actual patients, to the conduct of clinical trials research as opposed to an approach overly focused on abstract statistical analyses that often discouraged AIDS patients from accessing care in trials.

In the fifth section, “Participatory Knowledge Making in Biomedicine,” Epstein establishes that treatment activists, due to their transformation in credibility status, became involved in numerous groups previously not open to them. They became part of groups like the NIH and FDA advisory committees, hospital and research center review boards, community advisory boards of pharmaceutical companies, and even a national board created by the Clinton administration charged with oversight of all AIDS-related research. Treatment activists’ involvement in the broader medical establishment has led to the inclusion of activist arguments in scholarly journal publications and presentations at scientific research conferences, Epstein argues. Furthermore, he notes that activists’ inclusion brought about changes in the definition of AIDS to reflect HIV-related conditions affecting women, the establishment of new mechanisms by which the FDA and NIH regulate drugs and the trials that produce them, and an approach to the conduct of clinical trials that acknowledges the power drug developers have over patients in need.

In the sixth and final section, “The Broader Impact of AIDS Treatment Activism,” Epstein describes subsequent health activist movements as well as the complexity created by activists making themselves experts. He argues that the story of the AIDS social movement lends itself to a new type of health-related activism that involves the construction of identities around particular disease categories and the assertion of political claims on the basis of those identities. Epstein includes examples of similar strains of activism, including Lyme disease and breast cancer patients promoting their knowledge of their conditions in the early 1990s. He additionally reports that, when groups like ACT UP demonstrated their credible knowledge to the biomedical establishment, they also ingrained themselves within that establishment, separating themselves from their activist colleagues who had not achieved such credibility. Epstein closes the article by stating that researchers should further analyze social movements like AIDS activism that address science and the processes that make scientific knowledge. Such exploration, he contends, could provide a deeper and more comprehensive analysis of the construction of medical knowledge and how the practice of medicine changes over time.

The Impact of “Lay Expertise”

As of June 2024, the article “Lay Expertise” has 1,654 citations on Google Scholar and is cited by medical sociologists and scholars exploring relationships between the lay public and the development of biomedical knowledge, as well as the dynamics of social movements. The work was of particular importance to scholars who focus on the way that individuals interface with the science of reproductive technologies, as well as reproductive policy. Gay Becker, who studies medicine through an anthropological lens, cites Epstein in a chapter of her 2000 book The Elusive Embryo: How Men and Women Approach Reproductive Technologies that discusses one self-help organization that developed out of a social movement for infertility awareness. Susan Kelly, whose 2003 sociological case study of the US Human Embryo Research Panel includes an examination of public bioethics bodies in terms of their relationship to the authority of science and other forms of expertise, cites Epstein in a note regarding the classification of the bioethics movement as a distinctive social movement.

“Lay Expertise” is one of the first scholarly explorations of how laypeople involved in health activism engage with scientific institutions that directly impact their lives. In the article, Epstein laid a theoretical foundation for additional research on illness-related social movements, such as those related to raising infertility awareness and the bioethics of embryonic stem cell research. Since its publication, other researchers have used “Lay Expertise” as a model for their own investigations of expertise in medicine and activism.