On August 2, the new law on bioethics was promulgated. His article 30 is devoted to “Children with variation in genital development” (VDG). “It is the first legal text in France to refer to it”, notes the professor-researcher in law Benjamin Moron-Puech, in a context where the supervision of early interventions to end their sexual indeterminacy, through surgery or hormones, is increasingly debated.
First, the article conditions the care of these children by rare disease reference centers (CRMR), created following the first National rare disease plan 2005. Until then, there was no obligation to follow up in these centers. The text specifies that the diagnosis and the therapeutic choice will be made during a national multidisciplinary consultation meeting (RCP), composed of experts. “The RCP existed before, but the doctors of the CRMR only presented certain cases for which they could not rule internally,” details Dr Claire Bouvattier, pediatric endocrinologist at Kremlin-Bicêtre (Val-de-Marne). From now on, no doctor will manage his patient alone. “
The article recalls the notion of“Therapeutic abstention” as a possible treatment proposal under the “Principle of proportionality ». In other words, upstream of their decisions, members of the RCP must ask themselves if there are more benefits – and evidence to this benefit – in intervening on the child than not. The text insists on seeking the consent of the minor “If he is able to express his will”, the need for “Psychosocial support” family and inform them of the existence of associations specializing in GBV. Finally, the article extends from three days to three months the deadline for declaring sex in the civil status after birth.
The Intersex and Allied Collective (CIA) denounces, through one of its members, a law “Soft which does not break with the pathologizing approach of intersex and which institutionalizes the management by the CRMRs, even though it is in these centers that the management protocols are established and in which take place the practices that we denounce ”. The collective demanded a “Prohibition of unauthorized practices”.
In a report dated January 2019, Jean-Louis Touraine, LREM deputy and one of the rapporteurs of the bioethics law, formulated restrictive proposals on this subject, in particular the creation of a “Legislative provision (…) which would affirm that the medical acts of sexual assignment – thus not including the medical interventions carried out when the vital prognosis is engaged – carried out on minors do not meet a medical necessity ”. The deputies of the majority had moreover prepared amendments conditioning, for example, an intervention without the consent of the child to a “Immediate vital necessity”. They were finally withdrawn before the first reading of the proposed law on bioethics, in October 2019. “ We felt it wouldn’t pass, assures Jean-Louis Touraine. Unfortunately, France is hampered in its developments by elites or conservative officials and resistant to too substantial progress. “ For his part, Benjamin Moron-Puech believes that banning certain practices, “It was, in fact, to recognize their illegality in the past”.
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Intersex children: clarifying the law of bioethics