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N° 132 :





The Office of the United Nations High Commissioner for Human Rights considers that "intersex people are born with sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies." Following its reflection on the situation of such people concerned by differences of sex development (expression preferred by the CCNE to 'intersex people'), the CCNE in the present opinion, which was requested by the Ministry for Solidarity and Health, has principally focused its analysis on the care afforded to the children concerned, the support given to their parents, the evolution of medical practices, and how a consensus can be reached between the people concerned and physicians.


Manifestations of these heterogeneous and complex variations: the number of people affected varies greatly depending on the point of view¾very many according to advocacy groups for intersex people (1.7% to 2%, or even higher according to some groups), whereas physicians view these variations as 'rare diseases,' which are seen in 0.02% of births. Most differences of sex development do not hinder assignment of sex and are not life-threatening.


Suffering and anger of the people concerned: the consultations highlighted the great suffering and anger of people who experienced early surgery and/or treatment. These people emphasize the physical, psychological, sexual, and social trauma experienced during childhood, adolescence, and adulthood, and their conflicts with many specialist physicians.


Unease of professionals: the consultations also revealed a feeling of unease among physicians, surgeons, and endocrinologists regarding accusations and questioning of their practices by advocacy groups. In this regard, the physicians emphasize that over the decades early surgical and/or hormonal interventions have declined.


Lack of evaluation of past interventions and scarcity of data hamper ethical reflection regarding the following realities: the irreversibility of interventions in young children in the absence of their consent; a situation hard to deal with for parents and children alike; fundamental differences of approach to the question. Nonetheless, the CCNE considers that ethical reflection should promote dialogue between all parties.


Complex ethical questions: in this type of situation, ethical reflection is subject to doubt, uncertainty, and embarrassment, notably concerning the determination of sex, a question that cannot simply be reduced to chromosomal, genetic, endocrine, and morphological data. Ethical reflection is also tested by what constitutes appropriate behavior of medical teams, by tensions generated by differences of opinion between medical professionals and parents, by the place of consent and by the parents' understanding of the significance of consent and of intervention (or of non-intervention) for the child's development and choice. The CCNE considers that reflection prior to formulation of this opinion could help reduce these tensions, with a view to overcoming current disagreement, while reinforcing the support and information provided and developing training and research in this complex field.