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

• Grant number: 24/23706-0
• Support Opportunities: Scholarships in Brazil - Post-Doctoral
• Start date: May 01, 2025
• End date: April 30, 2027
• Field of knowledge: Humanities - Sociology - Sociology of Knowledge
• Principal Investigator: André Luiz Sica de Campos
• Grantee: Roberto Rubem da Silva Brandão
• Host Institution: Faculdade de Ciências Aplicadas (FCA). Universidade Estadual de Campinas (UNICAMP). Limeira , SP, Brazil
• Associated research grant: 23/15066-9 - Emergent Diseases, Patient Activism, and the Co-Production of Expertise and Democracy in US, France and Brazil (CoProExpert), AP.R

Abstract

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. The arena of health politics has become a focal site where the relationship between expertise, democracy, and trust is negotiated. While patient communities have successfully inserted themselves into the public understanding of diseases and pushed for more responsive public health policies, some medical communities have opened themselves to participatory science formats to regain public credibility. Although such cooperatively co-produced modern disease 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 delegitimate expert knowledge. Indeed, this delicate balancing act between diversification and socialization of expertise and efforts to fortify, renovate, and strengthen scientific institutions as essential guardrails of liberal democracy is one of the greatest challenges of our time. The proposed study offers a systematic exploration of this critical issue in Brazil, France, and the US. We will compare the contestations and collaborations between medical science agencies and patient organizations 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. By analyzing this friction point in our contemporary health politics, we will shed light on how trust in science and experts may be rebuilt and explain what local approach is more likely to foster a balanced synergy between expert authority and public involvement in science. Our findings will offer important explanations of how to fortify democratic resilience in the face of future health crises.