ECE2024 Rapid Communications Rapid Communications 1: Reproductive and Developmental Endocrinology (7 abstracts)
Comparative study of the legal framework for the medical care of people with differences of sex developmental (DSD) across the world
Nicolas Kalfa 1 , Beth Drzewiecki 2 , Luis Braga 3 , Marco Castagnetti 4 , Jacques Birraux 5 , Magdalena Fossum 6 , Alexander Springer 7 , Anka Nieuwhof-Leppink 8 , PJ Lopez 9 , Abraham Cherian 10 , Piet Hoebeke 11 , Clementine Vialla 12 , Francoise Paris 1 & François Vialla 12
1Hospital Center University De Montpellier, Montpellier, France; 2MassGeneral Hospital for Children, Boston, United States; 3McMaster University, Hamilton, Canada; 4Bambino Gesù Children’s Hospital, Roma, Italy; 5Hôpitaux Universitaires de Genève (HUG), Genève, Switzerland; 6Karolinska Institute, Sweden; 7Medical University of Vienna, Wien, Austria; 8UMC Utrecht, Utrecht, Netherlands; 9Universidad De Chile Facultad De Medicina Division Sur, San Miguel, Chile; 10Great Ormond Street Hospital for Children, United Kingdom, 11Ghent University Hospital, Gent, Belgium; 12Faculty of Law and Political Science, Montpellier, France
Purpose: 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.
Material and 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 associated with micropenis or undescended testis (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 raises the question of how far we should genetically explore minor genital variations and if the patients with minor phenotypes but with genetic variants are included in this legal frame. This situation 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.
Volume 99
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Endocrine Abstracts
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