Évolutions législatives et enjeux éthiques liés à la prise en charge des enfants ayant un trouble de la différenciation sexuelle (DSD)

Abstract

The ethical dilemma concerning the care of children with a disorder of sex development opposes patients who have benefited from undeniable medical and surgical advances over the past 30 years and patients who have suffered from initial carek, experienced as “torture” or “genital mutilation”. The latter, grouped into advocacy organization (including the International Intersex Organization), recommend that genital operation of children must be avoided until they can give their prior consent, in the name of the fundamental right to self-determination and physical integrity. This “free choice” left to the child would not take into account the opinion of the parents or that of the medical team, nor any psychological, social and societal consequences, nor the risks of late surgery. Recent legislative developments are exposed. The interest of legislating on these delicate situations affecting the most intimate is questioned, especially as they are of great complexity because of the heterogeneity of genetic causes and family situations. Medico-surgical Societies, in connection with patient associations denounce this media hold by “Intersex” activists, who are not representative of the patients having been managed more recently. They advocate to continue to understand these situations on a case-by-case basis, leaving the choice to the parents to allow the child to grow up in a gendered body.