Abstract
The medical management of differences of sex development (DSD)/intersex in early childhood has been criticized by patients' advocates as well as bioethicists from an ethical point of view. Some call for a moratorium of any feminizing or masculinizing operations before the age of consent except for medical emergencies. No exhaustive ethical guidelines have been published until now. In particular, the role of the parents as legal representatives of the child is controversial. In the article, we develop, discuss, and present ethical principles and recommendations for the medical management of intersex/DSD in children and adolescents. We specify three basic ethical principles that have to be respected and substantiate them. The article includes a critical discussion of the best interest of the child and of family privacy. The argumentation draws upon recommendations by the working group "Bioethics and Intersex" within the German Network DSD/Intersex, which are presented in detail. Unlike other recommendations with regard to intersex, these guidelines represent a comprehensive view of the perspectives of clinicians, patients, and their families. Conclusion: The working group identified three leading ethical principles that apply to DSD management: (1) to foster the well-being of the child and the future adult, (2) to uphold the rights of children and adolescents to participate in and/or self-determine decisions that affect them now or later, and (3) to respect the family and parent-child relationships. Nine recommendations for the management of DSD indicate how these ethical principles can spelled out and balanced against each other in the clinical setting.
| Original language | English |
|---|---|
| Journal | European Journal of Pediatrics |
| Volume | 169 |
| Issue number | 6 |
| Pages (from-to) | 671-679 |
| Number of pages | 9 |
| ISSN | 0340-6199 |
| DOIs | |
| Publication status | Published - 06.2010 |
Funding
Acknowledgment This research project was part of the German Research Network Intersex (U. Thyen/O.Hiort) funded by the German Ministry of Education and Research. The authors thank Deborah Landry for translating the Addendum. 2Members of the Working Group: Prof. Claudia Wiesemann, M.D. (Medical Ethics/Working Group leader), Andrea Dörries, M.D. (Medical Ethics/Pediatric and Adolescent Medicine), Eva Hampel, Ph.D. (Medical Sociology), Gerda Janssen-Schmidchen (member of a parent’s group), Eckhard Korsch, M.D. (Pediatric Endocrinology, Pediatric and Adolescent Medicine), Eveline Kraus-Kinsky (self-help group member), Clothilde Leriche, M.D. (Pediatric Surgery), Eveline Loeser, M.D. (Obstetrics and Gynecology, Pediatric and Adolescent Gynecology), Luise Müller (Working Group coordinator), Heiko Reutter, M.D. (self-help group member), Sonja Rothärmel, J.D. (Medical Law), Prof. Gernot H.G. Sinnecker, M.D. (Pediatric Endocrinology, Pediatric and Adolescent Medicine), Susanne Ude-Koeller, Ph.D. (Medical Ethics), Knut Werner-Rosen (Psychology/Psychotherapy), Prof. Gerhard Zöller, M.D. (Urology), and one additional self-help group member. 3Funded by the German Ministry of Education and Research
Research Areas and Centers
- Academic Focus: Center for Brain, Behavior and Metabolism (CBBM)
