S Krege1, F Eckoldt2, A Richter-Unruh3, B Köhler4, I Leuschner5, H-J Mentzel6, A Moss7, K Schweizer8, R Stein9, K Werner-Rosen10, P Wieacker11, C Wiesemann12, L Wünsch13, H Richter-Appelt8. 1. Dept. of Urology, Kliniken Essen-Mitte, Germany. Electronic address: s.krege@kliniken-essen-mitte.de. 2. Dept. of Pediatric Surgery, University of Jena, Germany. 3. Dept. of Pediatric Endocrinology, University of Münster, Germany. 4. Dept. of Pediatric Endocrinology and Diabetology, Charite - University of Berlin, Germany. 5. Dept. of Pathology, University of Kiel, Germany. 6. Section of Pediatric Radiology, University of Jena, Germany. 7. Division of Pediatric Endocrinology and Diabetes, Dept. of Pediatrics and Adolescent Medicine, University of Ulm, Germany. 8. Institute for Sex Research and Forensic Psychiatry, University Medical Center, Hamburg-Eppendorf, Germany. 9. Department of Pediatric, Adolescent and reconstructive Urology, University Medical Center Mannheim, Medical Faculty Mannheim, Heidelberg University, Mannheim, Germany. 10. Psychotherapist, Berlin, Germany. 11. Institute of Human Genetics, University of Münster, Germany. 12. Institute of Medical Ethics and History of Medicine, University of Göttingen, Germany. 13. Dept. of Pediatric Surgery, University of Lübeck, Germany.
Abstract
INTRODUCTION: The term variations of sex development subsumes a large number of congenital conditions including chromosomal mosaics and variations of chromosomal, gonadal, and phenotypic sex. A situation of this nature may cause severe distress to both, parents and affected persons. One of the reasons for this is the binary form of gender classification in the society. In the past, because of a fear of possible stigmatization and an inability to cope with complex situations, it has been medical policy and practice for newborns to undergo early, mostly 'feminizing' elective surgery with the aim of achieving an outer genital appearance that is unambiguously male or female. Protests by advocacy groups for the most part as well as the results of outcome studies have shown that the development of affected persons may be very different to what has been expected and often does not result in the intended clear female or male gender identity as had been intended. It, therefore, seemed a matter of urgency to implement this new awareness as well as the ethical and personal human rights perspectives in the recommendations for the medical and psychosocial management of diverse sex development (DSD) in the future. STUDY DESIGN: In 2012, an interdisciplinary group of German academics engaged in the field of DSD decided to work on a consensus paper for this topic. It involved the participation of all faculties and non-scientific groups dealing with DSD, in particular advocacy and service-user groups. In a structured consensus, process recommendations were developed based on scientific literature as well as personal experiences of clinicians and affected individuals. RESULTS: Finally, 37 recommendations were agreed on. The strength of consensus is reflected in the degree of agreement as expressed in percentages. CONCLUSION: The introduction of the consensus paper reflects on the emerging paradigm shift and the necessity for a more open view of gender within society. The paper is intended to aid the performance of appropriate diagnostics in DSD-affected newborns and especially to help parents and affected persons cope with the biological and social consequences of DSD. With regard to medical or surgical therapy, it gives information about the most recent treatment trends.
INTRODUCTION: The term variations of sex development subsumes a large number of congenital conditions including chromosomal mosaics and variations of chromosomal, gonadal, and phenotypic sex. A situation of this nature may cause severe distress to both, parents and affected persons. One of the reasons for this is the binary form of gender classification in the society. In the past, because of a fear of possible stigmatization and an inability to cope with complex situations, it has been medical policy and practice for newborns to undergo early, mostly 'feminizing' elective surgery with the aim of achieving an outer genital appearance that is unambiguously male or female. Protests by advocacy groups for the most part as well as the results of outcome studies have shown that the development of affected persons may be very different to what has been expected and often does not result in the intended clear female or male gender identity as had been intended. It, therefore, seemed a matter of urgency to implement this new awareness as well as the ethical and personal human rights perspectives in the recommendations for the medical and psychosocial management of diverse sex development (DSD) in the future. STUDY DESIGN: In 2012, an interdisciplinary group of German academics engaged in the field of DSD decided to work on a consensus paper for this topic. It involved the participation of all faculties and non-scientific groups dealing with DSD, in particular advocacy and service-user groups. In a structured consensus, process recommendations were developed based on scientific literature as well as personal experiences of clinicians and affected individuals. RESULTS: Finally, 37 recommendations were agreed on. The strength of consensus is reflected in the degree of agreement as expressed in percentages. CONCLUSION: The introduction of the consensus paper reflects on the emerging paradigm shift and the necessity for a more open view of gender within society. The paper is intended to aid the performance of appropriate diagnostics in DSD-affected newborns and especially to help parents and affected persons cope with the biological and social consequences of DSD. With regard to medical or surgical therapy, it gives information about the most recent treatment trends.
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Authors: Yolande van Bever; Hennie T Brüggenwirth; Katja P Wolffenbuttel; Arianne B Dessens; Irene A L Groenenberg; Maarten F C M Knapen; Elfride De Baere; Martine Cools; Conny M A van Ravenswaaij-Arts; Birgit Sikkema-Raddatz; Hedi Claahsen-van der Grinten; Marlies Kempers; Tuula Rinne; Remko Hersmus; Leendert Looijenga; Sabine E Hannema Journal: J Med Genet Date: 2020-04-17 Impact factor: 6.318