German Ethics Council: Intersex people should be recognized, supported and protected from discrimination

A recurring issue in the debate has been whether surgery on the sex organs of individuals with DSD (differences of sex development) and in particular of affected infants should ever be permissible.

Irreversible medical sex assignment measures in persons of ambiguous gender infringe the right to physical integrity, to preservation of sexual and gender identity, to an open future and often also to procreative freedom. The decision concerned is personal. The Ethics Council therefore recommends that it should always be taken solely by the individual concerned. In the case of a minor, such measures should be adopted only after thorough consideration of all their advantages, disadvantages and long-term consequences and for irrefutable reasons of child welfare. This is at any rate the case if the measure concerned serves to avert a serious concrete risk to the life or physical health of the affected individual.

If the individual’s sex can be unequivocally determined, as with congenital adrenal hyperplasia (CAH), the decision on surgical alignment of the genitals with that sex in a minor should always be based on thorough consideration of the medical, psychological and psychosocial advantages and disadvantages of early intervention. The guiding principle in this situation too should be the welfare of the child. In doubtful cases, sex disambiguation surgery of this kind should also not be carried out before the individual is competent to decide.

Medical diagnosis and treatment of persons with DSD should be restricted to specialized interdisciplinary centres and conducted by teams comprising medical practitioners and experts in all the relevant fields. Ongoing medical care should then be provided at independent specialized centres and accompanied by simultaneous advice given by other affected individuals and self-help organizations. All treatment measures should be comprehensively documented and remain accessible to those concerned for at least 40 years. The time-bar provisions applicable to criminal acts against children should be extended to criminal acts resulting in irreversible impairment of fertility and/or sexual sensitivity.

A fund should be established for the recognition and assistance of persons with DSD who have undergone pain, personal suffering, difficulties and permanent restriction of their quality of life due to treatments which are not, or are no longer, deemed to conform to the state of the art in medical science and technology and are based on discriminatory social conceptions of sexual normality. Self-help groups and associations of intersex people should in addition be assisted from public funds.

The Ethics Council also believes that personal rights and the right to equality of treatment are unjustifiably infringed if persons whose physical constitution is such that they cannot be categorized as belonging to the female or male sex are compelled to register in one of these categories. Provision should be made for such persons to register not only as “female” or “male” but also as “other”, or for no entry to be made until they have decided for themselves. To allow persons registered as “other” to enter into a responsible and reliable relationship recognized by the state and in law, the majority of the members of the Ethics Council suggest that persons whose sex is registered as “other” should be able to enter into a registered civil partnership. Some Council members recommend in addition that they should be allowed to marry. Future decisions on legislation should be based on a consideration of whether it is still necessary for a person’s sex to be registered at all.

The term “intersex” relates to individuals with physical specificities such that they cannot be unequivocally categorized as “male” or “female”. It is used by the public at large to denote a range of differences of sex development. It is sometimes deemed to include persons who do not regard themselves as intersex and indeed oppose the application of the term to themselves. For this reason the Ethics Council’s Opinion uses the phrase “differences of sex development” (DSD) as a generic medical term for all such specificities. Each of the various forms of DSD is associated with particular problems and needs on the part of those affected, and must therefore be considered individually in terms of the ethical and legal issues involved.

In addition, the Ethics Council distinguishes in its Opinion between “sex disambiguation” and “sex assignment” measures, each of which calls for a different approach. “Sex disambiguation” denotes a measure for correction of a biochemical and/or hormonal dysfunction that presents a potential health risk. It may also sometimes signify surgery to align external appearance with a person’s genetic sex as determined by the internal sex organs. Sex assignment surgery, on the other hand, represents a much more far-reaching interference with a child’s personality, because parents and doctors decide to which sex the child should be assigned where the sex is indeterminate.

The Opinion can be accessed (in German) at www.ethikrat.org. An English translation will be available in due course.