Temporal subjectification: interrogating the role of genetic diagnosis in patients and relatives' evidence-based activism in Belgium

Health- and disease-related events may be of highly significance for some patients and their relatives' life courses. Naming the medical diagnosis of a disease is one of them. It carries the inherent power of (re)configuring the individuals' life courses, which are moreover closely linked to those of their relatives, and especially blood families in the case of (hereditary) genetic diseases. Drawing on ethnographic observations and narratives from patients and relatives involved in some Belgian organizations concerned with genetic disorders (such as neuromuscular, renal, or intellectual), this paper is interested in the ways these concerned people understand the naming of a medical diagnosis event by (re)interpreting their past familial stories, trying to intervene in the present, and designing a desired future. Observations show that the medical genetic diagnosis also carries a strong power of patients and relatives' subjectification. This goes beyond individual processes to intertwine with larger social, political and biomedical dynamics and the interactions between various actors and institutions: civil society, scientific and medical professionals, public health institutions, or healthcare systems. Especially, this intertwines with the evolutions in patients and relatives' activism. So, the aim is to interrogate in an anthropological perspective of temporalities the role of medical diagnosis in the processes of patients and relatives' subjectification, as well as their ability to negotiate with the subjectivities which are taking shape within, such as through the forms of activism they adopt.