ENDO-ERN expert opinion: addressing the endocrine needs in considering genital surgery in disorders/differences in sex development individuals in Europe
The European Reference Network on Rare Endocrine Conditions (Endo-ERN) needs to take a cautious and evidence-based position regarding needs for genital surgery in individuals with differences in sex development (DSD). Given the multi-ERN coverage of DSD, the focus of our network is on rare endocrine care concerns in such surgeries and ensuring Endo-ERN's position aligns with the broader European emphasis on human rights, ethical medical practices, and patient-centered care. This discussion paper addresses the ethical, medical, and legal considerations surrounding genital surgery in individuals with DSD conditions in Europe. It advocates for a shift toward patient-centered care that prioritizes the rights and well-being of individuals with DSD conditions, particularly infants and children. The recommendations emphasize deferring nonurgent surgeries with irreversible effects until the individual can provide informed consent whenever possible, strengthening support systems for families, and promoting a standardized European framework that respects human rights, with clearly defined quality indicators and multidisciplinary care.
Authors
- Laëtitia Martinerie (ORCID: https://orcid.org/0000-0001-5113-6344)
- Theo Sas (ORCID: https://orcid.org/0000-0002-8727-1385)
- Martine Cools
- Malaika Fuchs
- Anna Strandqvist (ORCID: https://orcid.org/0000-0003-1138-3927)
- Giovanna Mantovani (ORCID: https://orcid.org/0000-0002-9065-3886)
- Susan O’Çonnell (ORCID: https://orcid.org/0000-0002-5887-2771)
- Cécile Brachet (ORCID: https://orcid.org/0000-0001-7955-2534)
- Henrik Thybo Christesen (ORCID: https://orcid.org/0000-0001-5330-6853)
- Luca Persani (ORCID: https://orcid.org/0000-0003-2068-9581)
- Manuela Brösamle
- Hedi L. Claahsen‐van der Grinten (ORCID: https://orcid.org/0000-0003-0181-0403)
- Anne Bachelot
- Gianni Russo
- Hiort Olaf
- Marek Niedziela
- Nicos Skordis
- Arlene Smyth
- Mariacarolina Salerno
- María Clemente León
- Martin Wabitsch
- Donatella Capalbo
- Philippe Chanson
- Violeta Iotova
- Angelica Lindén Hirschberg
- Main Thematic Group 7 for Sex Development and Maturation in the European reference Network on Rare Endocrine Conditions (Endo-ERN)
- Stefan Riedl
- Walter Bonfig
- Lexi Breen
- Anna Gradone
- Anna Nordenström
- Emily K White
- Sabine Hannema
- Claire Bouvattier
Institutions
- Radboud University Nijmegen (NL)
- University of Milan (IT)
- Aarhus University (DK)
- Aarhus University Hospital (DK)
- Radboud University Medical Center (NL)
- VSN International (United Kingdom) (GB)
- Amsterdam Neuroscience (NL)
- IRCCS Istituto Auxologico Italiano (IT)
- Amsterdam University Medical Centers (NL)
- Williams Syndrome Foundation (GB)
- University of Lincoln (GB)
- University of Amsterdam (NL)
- University of Lübeck (DE)
Publication Details
- Journal
- European Journal of Endocrinology
- Published
- 2026-01-14
- DOI
- https://doi.org/10.1093/ejendo/lvag009
- Citations
- 1
- Primary Topic
- Sexual Differentiation and Disorders
- Type
- article
- Field-Weighted Citation Impact
- 22.24
Funders
- Deutsche Forschungsgemeinschaft
- Ministero della Salute