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January 20, 2026European Journal of Endocrinology3 citations

ENDO-ERN Expert Opinion: Addressing the Endocrine Needs in Considering Genital Surgery in Disorders/Differences in Sex Development (DSD) Individuals in Europe

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HGHedi L. Claahsen‐van der GrintenSFSanne FiskerEWEmily K White

Key Points

  • The aim is to outline the ethical, medical, and legal aspects of genital surgery for individuals with DSD in Europe.
  • Evaluation of ethical, legal, and medical considerations regarding genital surgery in DSD individuals.
  • Discussion of the need for patient-centered care and evidence-based practices among European health networks.
  • Recommendations for deferring non-urgent surgeries until informed consent can be obtained.
  • Advocated for prioritizing patient rights and well-being in decisions about genital surgery.
  • Emphasized the need for a standardized European framework for DSD care that includes quality indicators.
  • Suggested strengthening support systems for families of individuals with DSD conditions.

Abstract

Abstract 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-centred 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 towards patient-centred care that prioritizes the rights and well-being of individuals with DSD conditions, particularly infants and children. The recommendations emphasize deferring non-urgent 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.

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Cite This Study

Grinten et al. (2026) studied this question.

synapsesocial.com/papers/696f1b189e64f732b51ef1fehttps://doi.org/10.1093/ejendo/lvag009
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