Emergent Diseases, Patient Activism, and the Co-Production of Expertise and Democracy in US, France and Brazil (CoProExpert)

Lead-PI: Gil Eyal, Columbia University

Consortium: Madeleine Akrich, Mines Paris Tech PSL; Larry Au, City College of New York; Janaina Pamplona da Costa & Andre Luiz Sica de Campos, UNICAMP; Maya Sabatello & Renan Goncalves Leonel da Silva, Columbia University.

Funders: ANR, FAPESP, NSF

 

Summary:

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. This project offers a systematic exploration of this critical issue in Brazil, France, and the US. The project will compare the contestations and collaborations between medical science agencies and patient organisations and explore the extent to which different participatory science formats can either mitigate or deepen the crisis of trust in public health and scientific experts.