Dépistage néonatal et configuration de sujets éthiques : une analyse sociohistorique

Neonatal screening as a whole encompasses the set of the most frequently used tests for genetic diseases. Neonatal screening for cystic fibrosis in particular is an emblematic example of the evolution of norms and techniques in this field. A sociological study of the decision-making process leading up to this screening in France reveals the ethical debates that it has triggered among the professionals involved. These debates reflect a configuration of “ethical subjects” who call into question their own practices, as defined by Foucault. The therapeutic principle, conviction, and compassionate extension are three positions defended by the professionals involved. As one of their aims is always to avoid suffering, this screening corresponds to a compassionate moral space of medical genetics, which should be seen in the context of contemporary Western societies' concern for health. But apart from this shared concern and the principles in which it is grounded, points of view on the means to this end vary and sometimes clash. Differences mostly relate to evidence-based medicine and the relationship of proximity and tension between neonatal and prenatal approaches. This screening for cystic fibrosis sometimes reveals an entanglement between these two approaches, as if, despite the efforts of some, they were difficult to separate.