Singularization/mutualization: The emergence of a new form of patient activism around biomedical entities

This chapter extends the Science and Technology Studies (STS) perspective on the involvement of patient organizations in biomedical research to organizations named after the infra-molecular entities driving their diseases: rare genetic disease and oncogene-focused patient groups. From what perspective do these novel kinds of associations rally around molecular entities and their affordances? Is the reference to these entities associated with specific modalities of action especially as regards basic and clinical research and therapy? We show that the grouping of patients around such entities amounts to a dual process of singularization/mutualization. Singularization processes parallel the disassembling and reassembling of nosological categories engendered by genomic investigations. However, singularizing is associated with mutualizing: by comparing disease singularities and their differential effects, patient associations identify shared problems or overlaps with regard to diagnostic practices and therapeutic interventions. The transformative effects of the singularizing and mutualizing processes make them a key component of the biomedicine and society research agenda.