Press

The CCNE has considered the situation of people affected by variations in sexual development (the term used by the CCNE, rather than "intersex people"). According to the Office of the United Nations High Commissioner for Human Rights, "intersex people are born with sexual characteristics (genital, gonadal or chromosomal) that do not correspond to standard binary definitions of male or female bodies".

This opinion, in response to a referral from the Ministry of Solidarity and Health, has focused its analysis mainly on the reception of the child, support for parents, changes in medical practices and ways of reaching a consensus between the people concerned and doctors.

Manifestations of these variations are heterogeneous and complex: the corresponding numbers vary greatly depending on the point of view: very high for intersex associations (1.7% to 2%, or even more, for some of them), but considered by doctors as falling into the categories of "rare diseases", i.e. 0.02% of births. Furthermore, the majority of cases of variations in sexual development do not pose a problem of gender assignment and are not life-threatening.

The suffering and anger of those affected: the hearings highlighted the great suffering and anger of people who have undergone early interventions. They stressed the physical, psychological, sexual and social trauma they had experienced in childhood, adolescence and adulthood, and their conflict with many medical specialists.

The unease of professionals: the hearings also highlighted the unease of doctors, surgeons and endocrinologists at being called into question by intersex associations, and their questions about their practices. In this respect, the doctors insist that over the decades, early surgical or hormonal interventions have decreased.

In the CCNE's view, these tensions could be eased by a discussion following on from this opinion, with a view to overcoming the current dissensus, while strengthening support and information and developing training and research in this complex area.

Recommendations

1. There is a need to centralise consultations and interventions in a single structure, to make it easier to reconcile points of view and to concentrate expertise on a limited number of people. For the CCNE, it is essential that children and their parents are cared for at one of the four sites that make up the Centre de référence des maladies rares (CRMR) for genital development, by a specialised and experienced multidisciplinary team.

2. The training and further training of professionals, including their psychological dimension, must be improved, particularly for those working in obstetrics and neonatology departments. The CCNE suggests that the Ministry of Health, the Haute Autorité de Santé and competent professional organisations develop good practice in this area.

3. Medical and surgical procedures, whether early or late, must respond to a medical need by presenting a therapeutic benefit.

In cases where a particular phenotype requires a delay in gender assignment, the possibility must be respected that, with the exception of cases meeting medical necessity, the person concerned should be involved in the therapeutic choices proposed to him or her when his or her degree of maturity so allows, provided that, due to their irreversibility, they jeopardise his or her physical integrity.

For all other situations involving variations in sexual development, where the performance of a medical and/or surgical procedure is under discussion, the decision should be taken after consultation and deliberation within the multidisciplinary team of the Centre of Reference, with the consent of the parents and the person concerned, as long as the latter is sufficiently mature. The decision should be documented, included in the medical file, signed by all those involved and recorded in a register placed under the responsibility of the Ministry of Health.

4. Clear and comprehensible information on the situation of people with variations in sexual development must be provided. The announcement given by the Reference Centre to the parents and persons concerned must take into account all the possibilities of treatment or lack of treatment. They must be given a sufficiently long period to reflect before a decision is made.

More generally, information should be included in school curricula (biology lessons) and developed for the general public.

5. It is essential to set up exhaustive databases and to support international research in this field. Full documentation of all treatment measures, as well as the absence of treatment and if necessary its consequences, must be ensured. The CCNE recommends the creation of an anonymous database in France and Europe for research purposes, with the aim of defining clinical therapeutic guidelines at national and international level.

6. Support for children and parents should be provided within the Reference Centre from birth to adulthood, and access to information, care and advice must remain widely available.

7. To encourage an essential dialogue between healthcare professionals, associations of people affected and parents, the CCNE proposes to create, with the Centre of Reference and the twenty centres of competence (which, is in relation with the Centre of Reference, can also provide follow-up for people affected as close as possible to their homes), a Forum on practices and their consequences, involving the various parties, with the aim of finding a mechanism enabling them to exchange, dialogue and hear the different points of view.

The CCNE also propose to organise regular interdisciplinary conferences at national level. These would be periodic conferences of ethical consensus, bringing together all parties - professionals, scientists, associations of people concerned - to create the conditions for joint reflection on practices.

These initiatives, which are also open to civil society, should help to change the way society looks at difference.