Gino’s lesson on humanity: genetics, mutual entanglements and the sociologist’s role

The identification of the genes responsible for certain serious diseases and the development of tests for identifying carriers of those genes help to put the individuals concerned in the forefront of ethical decisions. These decisions are unavoidable, especially when available knowledge and techniques have already been broadly disseminated. This article presents the case of a limb-girdle muscular dystrophy patient in Reunion Island who refuses to comprehend the lessons of genetics and to become part of the medical and associative networks that implement and diffuse that knowledge. His refusal is interpreted as the rejection of a form of agency and subjectivity, in which the individual is considered as an autonomous subject forced to choose between a number of pre-established options and responsible for the consequences of his choices. Using definitions of humanity and morality presented by François Jullien in his commentary on Mencius, the authors propose to consider that, by refusing, the patient is opting for a different form of morality and humanity. The article also shows how the interview situation constructs a situation that reduces the patient to silence.