Intégrer l’avis de l’enfant dans les décisions de soin : le cas du consentement aux investigations génétiques en oncopédiatrie

Abstract

Human genome sequencing is increasingly used in pediatric oncology to diagnose, to select targeted treatment or appropriate follow-up, or to identify hereditary transmission. Genetic investigations raise ethical and legal issues, and crystallize around the consent of the individuals concerned, in this case children but also their parents. For any consent, it is necessary in particular to ensure that the decision be taken in full knowledge of the facts, i.e. having understood the expected results or not and the implications for oneself and one’s relatives. Drawing up an inventory of the legal context and interviewing children and their parents make it possible to specify to what extent and under what conditions the child’s voice should and could be sought and heard when a genetic test is envisaged.