Practices and Knowledge: Philosophy of Biomedicine, Governance and Citizen Participation

The present chapter addresses the emergence of new forms of governance and citizen participation in the context of certain biotechnologies. On the basis of three case studies, we have mapped different models of public participation in health issues (especially health activism and Internet users, though not exclusively): identifying and analyzing actors, their mutual relationships (mainly those between “patients”/activists groups and the biomedical community), strategies and forms of participation, the exchange and circulation of “expert/lay” knowledge (and the role of the Internet in these processes), and the different activities and forms of knowledge production by “lay” citizen groups (or individuals). We draw special attention to the epistemic challenge resulting from these mixed forms of knowledge production derived from “experiential expertise”, “epistemic communities” and “evidence-based activism”. We detect “epistemic correctives”, demands regarding “undone science”, and hidden innovations in these types of citizen participation.