«Differences of sex development» (DSD) refers to cases where a person cannot be unequivocally assigned to the category of «male» or «female» on the basis of their physical characteristics. When such differences are found at birth – or at a later stage – complex medical-ethical questions arise. To provide guidance for practice, guidelines are currently being developed.
The term «DSD» covers a range of highly heterogeneous findings. Some of these conditions are associated with health risks or functional impairments, while others are not. In the past, children with DSD were often subjected to extensive hormone treatments and underwent surgical procedures. These were performed with the aim of adjusting their sexual characteristics so as to remove ambiguity. For some time now, increasing attention has been paid to the voices of individuals who experienced such interventions. It has become clear that their experiences were often marked by suffering and not infrequently were (and continue to be) traumatic.
Medical-ethical challenges
In recent decades, the medical landscape in Switzerland has changed. In children with DSD, measures are no longer routinely undertaken for the purpose of sex assignment or elimination of ambiguity. However, certain interventions are still carried out in specific cases. For physicians, but also for parents, the question arises as to what measures are justifiable from a medical-ethical perspective.
This gives rise to a series of further medical-ethical challenges: with regard to the appropriateness of medical interventions, the welfare of the child is the primary concern. Here, consideration needs to be given not only to the interests and needs of the (newborn) child, but also to the perspective of the person in later stages of their life. These longer-term developments are often extremely difficult to assess.
Particularly sensitive, from a medical-ethical viewpoint, is the fact that the medical measures which may be contemplated are surgical – sometimes even irreversible – interventions, and consent cannot be obtained from the (newborn) child. It needs to be determined whether decisions on interventions of this kind, insofar as they are not critical for survival, can be made without the child’s consent, and how the parents’ perspective is to be taken into account.
Background
Even though relatively few children are born with immediately detectable DSD, fundamental medical-ethical questions arise. At issue are basic values such as physical integrity and welfare, and the persons concerned are in a particularly vulnerable position. It is therefore essential that, throughout Switzerland, a broad consensus should be established for guidance in practice. For this reason, in 2012, the Swiss National Advisory Commission on Biomedical Ethics (NCE) recommended that the SAMS should prepare guidelines on this topic. In a position statement in 2016 ( French | German), the CEC declared its readiness to collaborate. However, in view of other priorities, this topic was not immediately addressed.
In 2024, with the adoption of Motion 23.3967 «Improving the treatment of children born with DSD» (French | German), the Swiss Parliament requested the Federal Council to ensure that appropriate medical-ethical guidelines could be rapidly prepared by the SAMS. Federal funding for this task was ultimately secured. The subcommittee is proceeding in an open-ended manner and can develop the guidelines freely. According to the motion, consideration is to be given to the 2012 Opinion of the NCE, the latest scientific developments and the perspective of «those affected».
Objective and procedure
In June 2025, the Central Ethics Committee (CEC) appointed a subcommittee with the necessary interprofessional and interdisciplinary breadth. It includes not only specialists from the relevant medical disciplines but also persons with expertise based on lived experience, as well as experts in the fields of law, psychology and ethics.
At the centre of this work is the question under what conditions medical measures in children with DSD are ethically justifiable. Here, the protection of physical integrity and autonomy plays a key role. Accordingly, the subcommittee is investigating in detail the question of when, with regard to possible medical interventions, capacity can be assumed to be present. It is also concerned with how the welfare of the child should be protected and how the parents’ needs should be dealt with. At the same time, the subcommittee is discussing additional questions such as the appropriate communication of DSD findings, psychological support for children and relatives, and the resources required for optimal management.
The subcommittee’s work began in August 2025. Information on the procedure for the preparation of guidelines can be found in this document:
«Procedure for the preparation of SAMS medical-ethical guidelines»
Composition of the subcommittee
Hubert Kössler, Bern, Ethics (Chair)
Deborah Abate, Lausanne, Advocacy
Professor Regina Aebi-Müller, Luzern, Law
Kathrin Ambord, Zürich, Advocacy
Dr Jacques Birraux, Genève, Paediatric Surgery
Dr Christian Budnik, SAMS, Ethics (ex officio)
Dr Kanetee Busiah, Lausanne, Paediatric Endocrinology
Professor Michelle Cottier, Genève, Law
Dr Irène Dingeldein, Düdingen, Child and Adolescent Gynaecology
Dr Mirjam Dirlewanger, Genève, Paediatric Endocrinology
Professor Isabel Filges, Basel, Medical Genetics
Professor Christa Flück, Bern, Paediatric Endocrinology
Dr Uchenna Kennedy, Zürich, Urology
Professor Annette Kuhn, Bern, Urogynaecology
Maike Nelissen, Fislisbach, Advocacy
Marie-Lou Nussbaum, Bern, Psychology
Dr Regula Ott, Zürich, Ethics
Rebecca Pfaffen, MAS, Zürich, Ethics/Nursing
Dr Norma Ruppen-Greef, Zürich, Psychology
Urs Vanessa Sager, Bern, Advocacy
Dr Jürg Streuli, St. Gallen, Paediatrics/Ethics
Dr Charlotte Wetterauer, Basel, Ethics
«Advocacy» refers to persons with expertise based on lived experience.