Patient organizations as the (un)usual suspects

The general aim of this chapter is to address the biobanking activities of the French patient organization Association Française contre les Myopathies (AFM). It seeks to put these activities into the broader context of biobanking activities in France. In particular, this chapter is concerned with the discourses and practices ¹ of the Généthon DNA and Cell Bank and how meaning is given to these. Ultimately, this chapter is about how both governance of biobanks and governance through biobanks ² is exercised. Methodologically, it draws mainly on primary documents, and observations and interviews that I have conducted with key actors in the field. ³