Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents

European Journal of Pediatrics

Volumn 169, Issue 6, 2010, Pages 671-679

  Wiesemann, Claudia ^a   Ude Koeller, Susanne ^a   Sinnecker, Gernot H G ^b   Thyen, Ute ^c  

^a UNIVERSITY OF GÖTTINGEN   (Germany)

^b Klinikum der Stadt Wolfsburg   (Germany)

^c UNIVERSITY HOSPITAL SCHLESWIG HOLSTEIN   (Germany)

Author keywords

Disorders of sex development; Ethics; Guidelines; Informed consent; Intersex

Indexed keywords

ADOLESCENT; CHILD; CHILD CARE; CHILD PARENT RELATION; CHILD WELFARE; FAMILY; GERMANY; HERMAPHRODITISM; HUMAN; HUMAN RIGHTS; INFORMED CONSENT; MEDICAL ETHICS; PATIENT; PATIENT AUTONOMY; PATIENT DECISION MAKING; PEDIATRICIAN; PRACTICE GUIDELINE; PRIORITY JOURNAL; PRIVACY; QUALITY OF LIFE; REVIEW; SEX DIFFERENTIATION DISORDER; SEXUAL DEVELOPMENT;

ADOLESCENT; CHILD; CHILD WELFARE; CHILD, PRESCHOOL; DECISION MAKING; ETHICS, MEDICAL; GERMANY; HERMAPHRODITISM; HUMANS; INFANT; INFANT, NEWBORN; INFORMED CONSENT; INTERNATIONAL COOPERATION; PARENT-CHILD RELATIONS; PERSONAL AUTONOMY; PRACTICE GUIDELINES AS TOPIC; SEX DIFFERENTIATION DISORDERS;

EID: 77952095552     PISSN: 03406199     EISSN: None     Source Type: Journal    
DOI: 10.1007/s00431-009-1086-x     Document Type: Review

References (30)

1. C Chase 1998 Surgical progress is not the answer to intersexuality J Clin Ethics 9 385 392 1:STN:280:DyaK1M7lsVWjsw%3D%3D 10029839
2. M Diamond HG Beh 2008 Changes in management of children with intersex conditions Nat Clin Pract Endocrinol Metab 4 4 5 10.1038/ncpendmet0694 17984980 (Pubitemid 350291112)
3. M Diamond HK Sigmundson 1997 Sex reassignment at birth. Long-term review and clinical implications Arch Pediatr Adolesc Med 151 298 304 1:STN:280:DyaK2s3js1Shsw%3D%3D 9080940 (Pubitemid 27133214)
4. Dreger AD (1999) When medicine goes too far in the pursuit of normality. Health Ethics Today 10(1)
5. U Thyen H Richter-Appelt C Wiesemann P-M Holterhus O Hiort 2005 Deciding on gender in children with intersex conditions. Considerations and controversies Treatments in Endocrinology 4 1 8 10.2165/00024677-200504010-00001 15649096 (Pubitemid 40129106)
6. KJ Zucker 2002 Intersexuality and gender identity differentiation J Pediatr Adolesc Gynecol 15 3 13 10.1016/S1083-3188(01)00133-4 11888804 (Pubitemid 34245572)
7. M Diamond 2004 Sex, gender, and identity over the years: a changing perspective Child Adolesc Psychiatr Clin N Am 13 591 607 10.1016/j.chc.2004.02. 008 15183375 (Pubitemid 38748547)
8. J Money JG Hampson JL Hampson 1955 Hermaphroditism: recommendation concerning assignment of sex, change of sex psychologic management Bulletin of the John Hopkins Hospital 97 284 300 1:STN:280:DyaG28%2Fht1OgsQ%3D%3D
9. J Money 1975 Ablatio penis: normal male infant sex-reassigned as a girl Arch Sex Behav 4 65 71 10.1007/BF01541887 1:STN:280:DyaE2M7mtlymtg%3D%3D 1130980
10. HG Beh M Diamond 2000 An emerging ethical and medical dilemma: should physicians perform sex assignment surgery on infants with ambiguous genitalia? Mich J Gend Law 7 1 1 63 1:STN:280:DC%2BD3s7ps1SqtA%3D%3D 12715806
11. K Kipnis M Diamond 1998 Pediatric ethics and the surgical assignment of sex J Clin Ethics 9 398 410 1:STN:280:DyaK1M7lsVWjsQ%3D%3D 10029841
12. British Association of Paediatric Surgeons Working Party 2003 Surgical management of children born with ambiguous genitalia Arch Dis Child 88 799 801 10.1136/adc.88.9.799 (Pubitemid 37094236)
13. Deutsche Gesellschaft für Urologie (2008) Störungen der sexuellen Differenzierung. http://www.dggg.de/-download/unprotected/g-01-07-05- stoerungen-sexuellen-differenzierung.pdf. Accessed 23 January 2009
14. J Frader P Alderson A Asch C Aspinall D Davis AD Dreger J Edwards EK Feder A Frank LA Hedley E Kittay J Marsh PS Miller W Mouradian H Nelson E Parens 2004 Health care professionals and intersex conditions Arch Pediatr Adolesc Med 158 426 428 10.1001/archpedi.158.5.426 15123472 (Pubitemid 38623575)
15. IA Hughes SF Houk SF Ahmed PA Lee LWPES/ESPE Consensus Group 2006 Consensus statement on management of intersex disorders Pediatrics 118 e488 e500 10.1542/peds.2006-0738 16882788 (Pubitemid 46085386)
16. M De Lourdes Levy V Larcher R Kurz Members of the Ethics Working Group of the CESP 2004 Informed consent/assent in children. Statement of the Ethics Working Group of the Confederation of European Specialists in Paediatrics Eur J Pediatr 162 629 633 10.1007/s00431-003-1193-z
17. M Diamond HK Sigmundson 1997 Management of intersexuality. Guidelines for dealing with persons with ambiguous genitalia Arch Pediatr Adolesc Med 151 1046 1050 1:STN:280:DyaK1c%2Fgt1Ggtg%3D%3D 9343018
18. K-K Ford 2001 "First, do no harm"-the fiction of legal parental consent to genital-normalizing surgery on intersexed infants Yale Law Policy Rev 19 469 488 12755146
19. JE Dayner PA Lee CP Houk 2004 Medical treatment of intersex: parental perspectives J Urol 172 1762 1765 10.1097/01.ju.0000138519.12573.3a 15371809 (Pubitemid 39245039)
20. C Chase 2003 What is the agenda of the intersex patient advocacy movement? Endocrinologist 13 240 242
21. Diamond M, Beh HG (2006) The right to be wrong. Sex and gender decisions. In: systsma SE (ed) Ethics and intersex. Springer, Dordrecht, pp 103-113
22. Kopelman LM (2005) The best-interest standard as threshold, ideal, and standard of reasonableness. In: Freeman M (ed) Children, medicine, and the law. Freegate, Burlington, Vermont, pp 425-443
23. Ross LF (1998) Children, families, and health care decision making. Clarendon, Oxford
24. Parens E (2006) Surgically shaping children. Technology, ethics, and the pursuit of normality. The Johns Hopkins University Press, Baltimore
25. Wiesemann C, Ude-Koeller S (2008) Richtlinien für medizinische Interventionen bei Kindern und Jugendlichen mit besonderer Geschlechtsentwicklung (Intersexualität): Was nützt der best-interest standard? In: Gro D, Neuschaefer-Rube C, Steinmetzer J (eds) Transsexualität und Intersexualität. Medizinische, ethische, soziale und juristische Aspekte, Medizinisch wissenschaftliche Verlagsgesellschaft, Berlin, pp. 13-21
26. J Daaboul J Frader 2001 Ethics and the management of the patient with intersex: a middle way J Pediatr Endocrinol Metab 14 1575 1583 1:STN:280:DC%2BD38%2FmvFGjsA%3D%3D 11795650
27. United Nations (1948) Universal Declaration of Human Rights, Art. 16 (3). http://www.un.org/Overview/rights.html. Accessed 23 January 2009
28. United Nations (1989) UN Convention of the Rights of the Child, Preamble. http://www2.ohchr.org/english/law/crc.htm. Accessed 23 January 2009
29. Wiesemann C (2006) Von der Verantwortung, ein Kind zu bekommen. Eine Ethik der Elternschaft. C H Beck, München
30. LD Dorn EJ Susman JC Fletcher 1995 Informed consent in children and adolescents: age, maturation and psychological state J Adolesc Health 16 185 190 10.1016/1054-139X(94)00063-K 1:STN:280:DyaK2M3pvVOqsw%3D%3D 7779827