Beyond biomedical institutions: An ethnographic study of community science and the rise of alternative therapeutic imaginaries

• Published in: Social science & medicine (1982) 2024-09, p.117377, Article 117377
• Main Author: Foti, Nicole
• Format: Article
• Language: English
• Subjects: biomedical citizen science; biomedicalization; direct social action; DIY medicine; health activism; health disparities
• ISSN: 0277-9536
• DOI: 10.1016/j.socscimed.2024.117377

This paper examines the project Open Insulin—a community-based initiative aimed at producing their own insulin in response to rising prices in the United States—as a lens to analyze the emergence of “alternative therapeutic imaginaries.” These imaginaries represent a particular form of social activity: a planning approach toward greater individualization, fragmentation, and corporatization of healthcare. Examples include health and biomedical practices undertaken by citizen scientists, do-it-yourself (DIY) patients, and others who resist or operate outside institutions of medicine. Drawing on ethnographic research, this study analyzes the construction of Open Insulin's health politics, which I argue is inspired by forms of direct social action. Unlike conventional activism approaches that tend to make claims on the state or others in power, direct social action involves direct intervention in segments of society. This paper explores how this approach is complicated by the regulatory economy and materiality of drug research, and the need for diverse expertise in the space of pharmaceuticals. I examine how project members grappled with these complications, surfacing competing perspectives for how to produce insulin safely and the role of industry experts and scientific institutions in this pursuit. I argue that Open Insulin's vision for community-produced and -owned medicines sheds light on growing mistrust of health institutions and diminishing public responsibility over healthcare provisions, leading to technolibertarian logics to address unmet healthcare needs, and potentially exacerbating health disparities by privileging those who can participate in such alternatives. This analysis contributes to broader debates on transformations in healthcare and social activism, highlighting the need for reorienting biomedical institutions toward public benefit. •This research examines the health politics of a community-based insulin project.•Public participation in research outside biomedical institutions is increasing.•Participation is linked to economic and organizational transformations in healthcare.•Alternative practices often focus on technology and individual responsibility.•This has implications for health disparities when addressing unmet healthcare needs.