Research, legislation, ethics

Summary

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 the standard binary definitions of male or female bodies".

This opinion, which was drawn up in response to a request from the Ministry of Solidarity and Health, focused its analysis mainly on the reception of the child, support for the parents, changes in medical practice and ways of reaching a consensus between the people concerned and doctors.

The manifestations of these variations are heterogeneous and complex: the corresponding figures 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 belonging to the categories of "rare diseases", i.e. 0.02% of births. Moreover, the majority of cases of variation 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 highlighted the physical, psychological, sexual and social trauma they had experienced in childhood, adolescence and adulthood, and their conflict with many medical professionals.

The discomfort of professionals: The hearings also highlighted the discomfort of doctors, surgeons and endocrinologists at being challenged by intersex associations and their questions about their practices. Doctors insist that early surgical or hormonal interventions have decreased over the decades.

The lack of evaluation of past interventions and the paucity of data make ethical reflection difficult in the face of the following realities: the irreversibility of interventions on young children without their consent; a reality that is difficult for parents and children to live with; fundamental differences in approach to the issue. Nevertheless, the CCNE believes that ethical reflection should encourage dialogue between all parties.

Complex ethical issues: In this type of configuration, ethics is challenged by doubt, uncertainty and embarrassment, especially when it comes to determining the sex to be given, an issue that cannot be reduced to chromosomal, genetic, endocrine and morphological data alone. Ethical issues are also raised by the behaviour to be adopted within the medical team, by the tensions that may arise between medical and parental opinions, by the place of consent and the parents' understanding of the scope of consent, by the impact of interventions (or non-interventions) on the child's development and choice.

In the CCNE's view, these tensions could be eased by a discussion following 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 meet 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 responding to a medical need, the person concerned may be involved in the therapeutic choices proposed to him or her when his or her degree of maturity so permits, 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, provided that 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 for treatment and the absence 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 provided to the general public.

5. It is essential to set up comprehensive databases and to support international research in this field. Complete documentation of all treatment measures, as well as the lack of treatment, and their potential consequences, must be guaranteed. The CCNE recommends the establishment of an anonymous database in France and Europe for research purposes, with the goal of defining clinical therapeutic guidelines at both national and international levels.

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 the people concerned, and parents, the CCNE proposes creating a Forum on practices and their consequences. This forum will involve the Centre of Reference and the twenty centres of competence, which can also provide close follow-up for those concerned near their homes. The different parties will come together with the aim of finding a mechanism that enables them to exchange, dialogue, and hear different points of view.

The CCNE is also proposing to organize regular interdisciplinary meetings at national level, periodic ethical consensus conferences, 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.