Research “in the wild” and the shaping of new social identities

This article examines new forms of techno-science-society interactions, in which non-scientists work with scientists to produce and disseminate knowledge. The term “research in the wild” is coined to name a special version of this new phenomenon. The primary illustration for this new form of research is connected with the Association Française contra les Myopathies (AFM), the history of which is particularly suitable for exploring certain mechanisms at work in the co-production of scientific knowledge and social identities. The article first compares laboratory research with research in the wild, emphasizing patient interest in maintaining control over cooperation. It then notes the intimate interrelations between the construction of patient identities and the collective form of research in which they participate. Finally, it examines the role of genetics, both as it is integrated into the construction of the collective, and also into the production of mechanisms of exclusion—the reverse side of the constitution of a collective identity.