Co-producing evidence: Ethnographic inquiry of a "wild" search for causation

Drawing on a multi-sited ethnography which explores the field of patients’ organizations (POs) concerned with genetic disorders within the Belgian context, this communication is interested in some knowledge-related collaboration between POs and scientific and medical experts, or “wild research” projects (Callon & Rabeharisoa, 2003). Especially, it examines an informant's narrative of the "wild" search for causation of the disorder by which his family is concerned and the inherent forms and modalities of knowledge production, circulation and validation. While STS scholars have traditionally seen POs as epistemic communities, they currently point out an increasing engagement in such novel forms of collaboration over the last decades. This leads to the emergence of a certain “evidence-based activism” (EBA) among POs, characterized by a growing articulation of credential and more “experiential” knowledge to define common epistemologies of the conditions they are concerned with. The springs of this articulation remain to be explored. Thus, the aim is to flesh out the recent concept of EBA, to empirically question what it covers, and how new biomedical knowledge is generated by “evidence activists”. Rather than provoking “radical openings in technoscientific practice”, our observations show a continuous co-production of knowledge taking place within POs engaged in EBA. So, this paper will take stock of these transformations and envisage the affordances and blind spots for STS of the use of new concepts such as EBA.