Pd49-02 Comparative Study of the Legal Framework for the Medical Care of People With Differences of Sex Development (Dsd) Across the World

You have accessJournal of UrologyPediatrics V (PD49)1 May 2024PD49-02 COMPARATIVE STUDY OF THE LEGAL FRAMEWORK FOR THE MEDICAL CARE OF PEOPLE WITH DIFFERENCES OF SEX DEVELOPMENT (DSD) ACROSS THE WORLD Nicolas Kalfa, Beth Drzewiecki, Luis Braga, Marco Castagnetti, Jacques Birraux, Magdalena Fossum, Alexander Springer, Anka Nieuwhof-Leppink, Pejota Lopez, Abraham Cherian, Piet Hoebeke, Clementine Vialla, Françoise Paris, and François Vialla Nicolas KalfaNicolas Kalfa , Beth DrzewieckiBeth Drzewiecki , Luis BragaLuis Braga , Marco CastagnettiMarco Castagnetti , Jacques BirrauxJacques Birraux , Magdalena FossumMagdalena Fossum , Alexander SpringerAlexander Springer , Anka Nieuwhof-LeppinkAnka Nieuwhof-Leppink , Pejota LopezPejota Lopez , Abraham CherianAbraham Cherian , Piet HoebekePiet Hoebeke , Clementine ViallaClementine Vialla , Françoise ParisFrançoise Paris , and François ViallaFrançois Vialla View All Author Informationhttps://doi.org/10.1097/01.JU.0001008752.72292.d7.02AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Some countries have introduced legislation to regulate medical practices regarding DSD. We performed an international comparative law study to better understand how to integrate our medical decisions into these regulations. METHODS: With an international medical law research unit: 1- we extracted legislative texts, decrees, ministerial recommendations from different countries 2- we sent a questionnaire to surgeons caring for DSD-children to understand the medical decision-making procedures. RESULTS: Data from 19 countries and 8 US states were analyzed. Legislation was enacted in only 6 countries and ministerial orders or case-law were issued in 4. Legislation is still in preparation in 11 countries while 6 have none. Laws range from a ban on surgery (Malta, Iceland) to the establishment of a multidisciplinary decision-making circuit in case of medical necessity. The decision is made at the local level (14 cases: Belgium, Italy, UK…), at the national level (8 cases: Nordic countries, France…) or after a court decision (Germany, Australia). Most countries recognize the person's consent as essential and the parents' decision cannot replace it (24/27). Age of consent varies from 5 to 18 years but most texts don't stipulate clear limits or defer to the child's maturity. Risks of sanctions for practitioners are most often unspecified, of a professional medical board nature (n=8) or rarely criminal (n=2). Posterior hypospadias are included in this process in 74% of cases, either systematically or when non isolated (Switzerland, Australia, France). CONCLUSIONS: Rarely has a medical activity been subject to such legislative framework while medical data and long-term studies remain sparse. This illustrates the special position pediatric urologists occupy at the interface of society, law and scientific knowledge and profoundly changes the way we practice, think and make therapeutic decisions. Source of Funding: Public funding from the National Reference Network for Rare Disease, Genital Development DSD DevGen © 2024 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 211Issue 5SMay 2024Page: e1050 Advertisement Copyright & Permissions© 2024 by American Urological Association Education and Research, Inc.Metrics Author Information Nicolas Kalfa More articles by this author Beth Drzewiecki More articles by this author Luis Braga More articles by this author Marco Castagnetti More articles by this author Jacques Birraux More articles by this author Magdalena Fossum More articles by this author Alexander Springer More articles by this author Anka Nieuwhof-Leppink More articles by this author Pejota Lopez More articles by this author Abraham Cherian More articles by this author Piet Hoebeke More articles by this author Clementine Vialla More articles by this author Françoise Paris More articles by this author François Vialla More articles by this author Expand All Advertisement PDF downloadLoading ...