Emergent Diseases, Patient Activism, and the Co-Production of Expertise and Democracy: A Comparative Study

This award will fund a research project to investigate a broad theoretical question: How and to what extent can participatory science counteract the crisis of trust in public health and medical expertise? In recent decades, emergent diseases have caused profound frictions in democratic governance across the Atlantic. Sluggish institutional responses and inadequate treatments have escalated disputes between advocacy groups, patients, medical experts, and scientists in regulatory agencies over the speed, direction, and implications of scientific research. Patient communities in the US and other countries have successfully pushed for more responsive public health policies, and some medical groups have opened themselves to participatory science formats to regain public credibility. Although such cooperatively co-produced expertise holds the potential for counteracting the decline of trust in experts, it is far from clear what formats are best suited to democratize scientific knowledge in ways that do not erode scientific authority and delegitimize expert knowledge. Insights from this project will contribute to deepening and strengthening the dialogue between patients and experts, thereby putting trust in experts on a surer footing. This research will also offer important explanations of how to fortify democratic resilience across the Atlantic in the face of future health crises. This project is a comparative study that seeks to document the dynamics of disease advocacy, contestation, and cross-country collaboration. The researchers will also compare across conditions and diseases by adding “control cases.” This comparative framework will allow us to study the co-production of expertise about emergent diseases through archival methods, participant observations, and semi-structured interviews with key stakeholders. In each case, there is a rich tapestry of factors, some of which are local, contextual, and time-dependent, which determine the social character of the parties involved in inclusionary arrangements and the nature of these arrangements. This project contributes to two areas of research in Sociology as well as the field of Science and Technology Studies: (1) a Sociology of Trust in Experts, which will generate innovative research into what makes expertise credible and trustworthy, or on the contrary, mistrusted; and (2) a Sociology of Contested Illnesses, where we will advance critical insights into the dynamics of activism and knowledge in contested illnesses. One of the key deliverables of this project will be to study modes of inclusion in the case studies and to develop an analytical framework that identifies the relations between the various factors, including (1) the organizational format of inclusion; (2) factors shaping the formation of disease identity; (3) the inherited repertoires available to patients; and (4) the political and legal environment.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.