Ethics Council provides public discussion forum for intersex problems

Last Wednesday, the German Ethics Council devoted its Bioethics Forum to the topic "Intersexuality – life between the sexes". Its aim was to remove the taboos from the social debate on intersexuality, to question prevailing socially constructed sexual norms and to start a discussion on the social acceptance of intersexuals.

The term intersexuality refers to a large number of different phenomena relating to persons whose sex is ambiguous, with varying causes, for example chromosomal or cellular.

Science normally sees intersexuality as a disturbance of sexual development; the persons affected see themselves as belonging to one variant of several possible genders. Dealing with intersexuality touches on a number of questions of medical, legal and social ethics, in particular the right to physical integrity. Michael Wunder, a member of the Council, conducted the discussion together with Lucie Veith and Claudia Kreuzer of the association Intersexuelle Menschen e. V. (Intersexual Persons Association), the psychoanalyst Hertha Richter-Appelt of University Medical Center Hamburg-Eppendorf, the academic lawyer Konstanze Plett of Bremen University and the medical ethicist Claudia Wiesemann of Göttingen University.

In an introductory paper, Hertha Richter-Appelt presented several types of intersexuality. She stated that with the increasing criticism of the earlier standards of treatment in the medical care of intersexuals, the ethical discussion on gender assignment and medical intervention in the case of intersexuality had also become more concrete and lively. With regard to future approaches to intersexuality, she urged that affected persons should be involved, instead of “going over their heads in assigning a gender to them and then also requiring them to go through life in a particular role, while experiencing themselves as men or women.”

According to Konstanze Plett, it follows from the Grundgesetz (Basic Law) of the Federal Republic of Germany, the Human Rights Convention of the Council of Europe and the United Nations Convention on the Rights of the Child “that people born intersex also have a right to their own gender identity”. Konstanze Plett was in favour of making sex assignment operations subject to judicial consent and enforcing the dovetailing of civil law and criminal law, and also interdisciplinary cooperation.

Lucie Veith and Claudia Kreuzer set out the problems which confront intersexual persons, and in the name of the association Intersexuelle Menschen e. V., they demanded that operations should not be performed without the informed consent of the persons affected unless they were necessary to life or health, that binding standards of treatment should be established, that the topic of intersexuality should be included in school and vocational college curricula, that persons injured should be compensated and rehabilitated and that the term “intersexuality” should be incorporated into current law.

Claudia Wiesemann presented the ethical principles and recommendations developed by the ethics team in the Netzwerk DSD/Intersexualität (Network DSD/Intersexuality). She stated that the best interests of the child and later adult, the right of children and young people to be involved in decisions or to self-determination and the respect of the parent-child relationship had the highest priority.

The central theme of the following discussion was at first the question as to how the right of minor children to share in decisions can be realized in practice and how to deal with the dilemma that in the absence of a potential control group neither treatment nor the omission of treatment and the consequences in each case for those affected can be examined in a form that satisfies scientific standards.

The following panel discussion, which was opened to the public, was largely motivated by the question as to why doctors in particular determine the current discourse, despite the fact that the problem has wide social repercussions. Several speakers demanded that instead of adapting the individual to society, society itself should be changed. Those affected were of the opinion that politicians in particular had a duty to become aware of discrimination against intersexuals and immediately to do something to end it. In particular the present practice of sex assignment operations is regarded as a violation of their right to protection of their (intersexual) sex and human dignity; politics should urgently create new legislation to remedy this, and the persons affected should be involved.

In its plenary meeting on 24 June, the German Ethics Council consulted on the panel discussion and the future course of action with regard to this subject. The panel discussion gave the persons affected a large public forum and a significant impetus for the future debate in politics and in public. In this way, the Ethics Council fulfils its mandate to inform the public on controversial topics and to encourage public discussion about them. The Ethics Council will continue to follow the topic, and in the course of the discussion on its future programme of work will decide whether and to what extent it should be dealt with further.

Further information on the forum can be accessed at here.