Reviewing the treatment of differences of sex development

10/Oct/2016

The SNSF is providing funding for University Children's Hospital Zurich's scientific review of the treatment of children with differences of sex development (DSD children).

They used to be called hermaphrodites and intersexuals. From the 1950s onwards, it was customary for children and newborns with no clear biological gender to be assigned their "true" gender as soon as possible by exploiting pharmacotherapy or by surgically operating on them. Many of those affected have experienced severe psychological and physical trauma as a result of their treatment.

The University Children's Hospital in Zurich is currently conducting a historical review of medical therapeutic practice in this field in cooperation with the Chair of History of Medicine of the University of Zurich. The Swiss National Science Foundation (SNSF) has approved the researchers' project application and has allocated half a million Swiss francs to the project. An interdisciplinary team headed by Professor Flurin Condrau, chair of medical history at the University of Zurich, Professor Rita Gobet, head of urology at the Children's Hospital and Jürg C. Streuli, paediatrician and ethicist at the Children's Hospital, will investigate the treatment of children with differences of sex development (DSD children) between 1945 and 1970. The project started on 1 October 2016 and will last two years.

Self-help organisation provided the impetus

The project will develop the work of a pilot study in medical history dating from 2014*. Prior to the pilot study, the self-help organisation zwischengeschlecht.org had demanded in an open letter that the treatment of DSD children should be historically reviewed. Since the 1990s, the people affected have been calling for more self-determination**.

The study will investigate how the treatment of DSD children has evolved since the Second World War. The current study will take on board the views of everyone involved, i.e. those affected and the healthcare professionals involved in diagnosis or treatment. A medical historical analysis of patients' medical records will also take place.

The Children's Hospital in Zurich has been regarded as a pioneer in research into differences of sex development and the treatment of DSD children since the 1950s. As a result, it has what is probably a unique body of documents that has been integrated into the State Archives in Zurich.

Important findings for current debate

The interdisciplinary research project will help provide a historical basis for the current debate on approaches to DSD people. It is also expected to deliver important findings for the ethical debate on treatment decisions.

"The SNSF regularly supports research projects that address issues of great social significance," says Paul Schubert, President of the Humanities and Social Sciences division of the SNSF Research Council. "In place of a biased approach, our researchers are developing a balanced, considered and nuanced perspective on what can be emotionally charged issues." By doing so, the humanities and social sciences are making an important and direct contribution to quality of life in Switzerland.

Contact

Paul Schubert
President of the Humanities and Social Sciences division, SNSF Research Council
Tel. +41 22 379 70 35
E-mail paul.schubert@unige.ch