Droit de savoir - droit à l'ignorance, aspects éthiques et psychologiques en oncogénétique pédiatrique

Somatic and constitutional genetic is of increasing importance in the practice of pediatric oncology and hematology. This acceleration first comes from technological advances and thrust forces exerted by research in threatening diseases. Requests from families themselves are likely to be influenced by the understanding that they will have of “genetic” and the comprehensive explanation that are given to them regarding the real issues of familial testing, nor minimized or fantasized. The group “Parents and caregivers and ethics in pediatrics” brought together parents, caregivers and a philosopher around to work on the ethical issues of genetic investigations in our professional context. An information booklet for parents has concretized this work. This article proposes to focus most of the ethical issues raised in this group by a dialectic summarized by the phrase “right to know, right to ignorance”. Without bringing to peremptory solutions, the article concludes by giving philosophical benchmarks to guide decisions.