In 2016-2018, we conducted the first policy-oriented research into intersex / Differences of Sex Development (DSD) in Flanders and Belgium, which consisted of two parts.
The first part of this project focussed on the background, prevalence and medical care to persons with intersex / DSD in Belgium. The investigation was made possible thanks to financial support from the Federal Secretary of State for Equal Opportunities. Some key elements of the medical management of children with intersex/Differences of Sex Development (DSD) have changed since the late 1990’s as affected adults and their parents have spoken out about the unwanted physical and emotional effects of the standard of care. The 2006 Chicago Consensus Statement has recognized the trauma induced by a lack of informed consent in medical decision-making and has called for user- and family-centered care, delivered by a multidisciplinary team of providers. Despite the increasing international attention for medico-legal and human rights issues in relation to intersex/DSD over the past decade, there is a fundamental lack of knowledge about the nature of these issues in Belgium. This was the first study to systematically explore and juxtapose the different concerns held by important stakeholder groups in the country.
The second part of the project, commissioned by the Flemish Cabinet of Equal Opportunities, was a first exploratory short-term sociological research into the experiences of persons with and families of children with intersex / DSD in Flanders. The research used a qualitative research method through in-depth interviews, in which not only attention was paid to the possible barriers that DSD conditions entail, but also highlights its possible positive aspects, both individually as at the relational level and at the level of society. The final report contains a wealth of information that not only provides guidelines for policy makers, but also for those working with intersex people or those interested in pursuing research in the topic.
Acknowledgements: This project was funded by the Flemish Minister of Equality Policies and the Federal Secretary of State for Equal Opportunities.