UCSF

Access to medicines is a critical ongoing challenge to advancing goals of health equity. Recent changes in the political economic and technoscientific domains of pharmaceuticals beg a reexamination of shifting processes in this space, especially emergent forms of collective action to address structural conditions for making new and old drugs. In particular, two trends in science—open science and community biology—have created the social and technical conditions through which new alternative imaginaries have emerged to research, develop, and make medicines. This dissertation offers an ethnographic account of these actions to common pharmaceutical knowledge through open science and lay participation in drug research. I examine two sites: the first site is a diffuse network of academic and nonprofit initiatives applying open science to drug research and development; the second site is a citizen science initiative, Open Insulin, leveraging a direct social action approach to make insulin in a community lab.Drawing on 29 in-depth interviews, over 300 hours of observations of citizen scientists’ organizational and research activities, and content analysis of journal articles and university and nonprofit organizations’ policies and websites, I trace a burgeoning movement to apply “open” principles and practices to the research and making of pharmaceuticals, an area I refer to as open pharma. I begin with an analysis of this open pharma movement by examining three key characteristics. First, I identify the major narratives discursively employed by actors to frame the movement and provide rationales to mobilize others, often drawing on market logics. Next, I trace the active building and institutionalizing of open pharma through the establishment of organizations and open sharing policies. Then I reveal sites of resistance actors experienced in university settings related to publishing and commercialization imperatives—which often translated to patent imperatives. My next set of findings focus on Open Insulin and the connections between their organizational structure and goals for creating more egalitarian alternatives to corporatized science practices and logics. I surface how membership and decision-making authority acted as key nodes of tension and change within the group, and I illustrate the project’s mission as continuously constructed in relation to these nodes. Finally, I further explore the discursive production of Open Insulin’s mission through two competing visions for making affordable insulin: an unprecedented but more transformative approach for “community manufacturing” through medicine cooperatives, and a more common and socially legitimized approach through a contract manufacturer partnership. As group members organized toward these visions, I unpack specific challenges groups face in looking to resist processes of capitalization in highly technical and regulated domains such as pharmaceuticals. Through my tracing of movement practices and aims, I illuminate important entanglements between divergent approaches to social change, markets, regulatory regimes, and technoscientific infrastructure that construct and value openness in pharmaceuticals. This research articulates alternative imaginaries for how to organize biomedical knowledge production, and how they variously shape projects to intervene in inequities perpetuated by the political economy of health and illness.