Genetic diagnosis and emergence of patients and relatives' evidence-based activism

Health- and disease-related events may be of highly significance for patients and their relatives. Naming a medical diagnosis 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, this paper is interested in the ways these concerned people make sense of the naming o... Mehr ...