Abstract
Controversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence on patient preference is needed to inform decision-making. We conducted a multicentre survey by cross-sectional questionnaire in 14 specialized clinics in six European countries. The sample comprised 459 individuals (≥ 16 years) with a DSD diagnosis, including individuals with congenital adrenal hyperplasia (CAH) (n = 192), XY DSD with prenatal androgen effect (A) (n = 150), and without (nA) (n = 117). Main outcome measures were level of agreement with given statements regarding genital surgery, including clitoris reduction, vaginoplasty, and hypospadias repair. A total of 66% of individuals with CAH and 60% of those with XY DSD-A thought that infancy or childhood were the appropriate age for genital surgery. Females with XY DSD were divided on this issue and tended to prefer vaginoplasty at a later age (XY DSD-A 39%, XY DSD-nA 32%). A total of 47% of males preferred early hypospadias surgery. Only 12% (CAH), 11% (XY DSD-A), and 21% (XY DSD-nA) thought they would have been better off without any surgery in childhood or adolescence. Individuals who had early genital surgery were more likely to approve of it. Outcome data failed to support a general moratorium on early elective genital surgery. Participant perspectives varied considerably by diagnostic category, gender, history of surgery, and contact with support groups. Case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake. Trial registration: German Clinical Trials Register DRKS00006072.
| Original language | English |
|---|---|
| Journal | Archives of Sexual Behavior |
| Volume | 50 |
| Issue number | 3 |
| Pages (from-to) | 913-923 |
| Number of pages | 11 |
| ISSN | 0004-0002 |
| DOIs | |
| Publication status | Published - 04.2021 |
Funding
For an overview of all contributors, see the study protocol. Other members of the dsd-LIFE group are: Birgit Kohler, Peggy Cohen-Kettenis, Annelou de Vries, Wiebke Arlt, Claudia Wiesemann, Jolanta Slowikowska-Hilczer, Aude Bracde la Perriere, Charles Sultan, Francoise Paris, Claire Bouvattier, Ute Thyen, Nicole Reisch, Annette Richter-Unruh, Hedi Claahsen-van der Grinten, Anna Nordenstr?m, Catherine Pienkowski, and Maria Szarras-Czapnik. The authors publish this paper in memoriam and with the greatest thanks to Privatdozentin (PD) Dr. Birgit Koehler (Charit? Universit?tsmedizin, Klinik f?r P?diatrie m. S. Endokrinologie und Diabetologie), the principal investigator of the European consortium dsd-LIFE and initiator and coauthor of this paper, who died in March 2019 from a severe illness. We honor her dedicated leadership, energy, and enthusiasm for the dsd-LIFE project and the collaboration of clinicians, patients, and support groups, which aim to improve clinical care for ?differences/disorders of sex development.? The authors are in deep grief about this loss and state their gratefulness for the outstanding work of Dr. Koehler. The authors are grateful to the participants of dsd-LIFE and to all of the study centers for their enthusiasm and dedication in contacting potential participants and collecting high-quality data. They especially thank the support groups in the different countries for their help.
Research Areas and Centers
- Academic Focus: Center for Brain, Behavior and Metabolism (CBBM)
