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Advances in Urology
Volume 2012, Article ID 185787, 8 pages
http://dx.doi.org/10.1155/2012/185787
Research Article

DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey

1Institute of Biomedical Ethics, University of Zurich, Pestalozzistraße 24, 8032 Zurich, Switzerland
2Department of Pediatric Endocrinology, University Children's Hospital, Charité, Humboldt University, 13353 Berlin, Germany
3Office of Ethics, Children's Hospital Boston Division of Medical Ethics, and Harvard Medical School, Boston, MA 02115, USA

Received 5 February 2012; Accepted 17 May 2012

Academic Editor: Hiroki Shima

Copyright © 2012 Jürg C. Streuli et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Treatment and support of a child with DSD calls for experience and expertise in diagnosis, surgical techniques, understanding of psychosocial issues, and recognizing and accepting the significance of individual values of children, families, and support groups. The range of what is considered “appropriate” care and treatment is still very broad and critics point at major gaps between ethical guidelines and current clinical practice. Based on a qualitative study with 27 members of multidisciplinary teams and support groups, we supplement the professional consensus statements and current ethical guidelines with 14 requirements from four different perspectives, to characterize more fully the responsible treatment and support of children and families affected by DSD. Overall, our findings highlight the importance of close collaborations between different experts and a shift from the often simplified dispute about genital surgeries to a more holistic perspective with a long-term management strategy, which should serve as a cornerstone not only for clinical practice but also for future research and evaluation studies.