The Swiss National Advisory Commission on Biomedical Ethics has published a much lauded paper titled ‘On the management of differences of sex development. Ethical issues relating to “intersexuality”‘.
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The report comes after 5 years of political initiatives initiated by Zwischengeschlecht.org, first in state parliaments and thereafter in the federal parliament, always adamant on including multiple members of parliament and covering the entire political spectrum. As a direct result of the federal interpellation in 2011, the Swiss Federal Government requested the National Ethics Commission to write a report, which was recently published. In the introduction, the Commission acknowledged that it is “largely thanks to the efforts of self-help/advocacy groups” that “increasing attention is now being paid to the topic of “intersexuality” in the media and in professional circles – including the fields of medical law and ethics – both nationally and internationally.”
Zwischengeschlecht.org as well as the Swiss parents’ self-help group participated in hearings of the commission. As Daniela Truffer (Zwischengeschlecht.org) said in her adress on occasion of the presentation of the report: “This is the very first time [in Switzerland], that an official body took the persons affected seriously, listened to their concerns and translated them into concrete recommendations.” The pragmatic report was also met with applause internationally, e.g. OII Australia called it ‘ground-breaking’ and German scholar Heinz-Jürgen Voß titled ‘Short, knowledgeable, largely clear’. We were also told by multiple persons concerned that they actually wept while reading the report because they were so moved by its contents.
Highlights of the Commission’s recommendations include (p. 18-20):
1. The suffering experienced by some people with DSD as a result of past practice should be acknowledged by society. The medical practice of the time was guided by sociocultural values which, from today’s ethical viewpoint, are not compatible with fundamental human rights, specifically respect for physical and psychological integrity and the right to self-determination.
4. Protection of the child’s integrity is essential. Given the uncertainties and imponderables involved, a psychosocial indication cannot in itself justify irreversible genital sex assignment surgery in a child who lacks capacity.
11. In a case of DSD, it must be possible for the sex recorded in the official registration of births to be unbureaucratically amended. […]
12. There should be a legal review of the liability implications of unlawful interventions in childhood, and of the associated limitation periods. Questions of criminal law, such as the applicability of offences of assault (Art. 122 and 123, StGB) and the prohibition on genital mutilation (Art. 124, StGB), should also be investigated.
We have no illusions that this report is only a first step, although a significant one. However, unless these recommendations are now translated into political actions and finally legislation, it’s obvious that the status quo of unabashed intersex genital mutilations in our children’s clinics is bound to continue …