The Fifth World Congress on Family Law and Children’s Rights (Halifax, August 2009) adopted a resolution endorsing a new set of ethical guidelines for the management of infants and children with disorders of sex development (DSD) [www.lawrights.asn.au/index.php?option=com_content&view=article&id=76&Itemid=109]. The ethical principles developed by our group were the basis for the Halifax Resolution. In this paper, we outline these principles and explain their basis. The principles are intended as the ethical foundation for treatment decisions for DSD, especially decisions about type and timing of genital surgery for infants and young children. These principles were formulated by an analytic review of clinician reasoning in particular cases, in relation to established principles of bioethics, in a process consistent with the Rawlsian concept of reflective equilibrium as the method for building ethical theory. The principles we propose are: (1) minimising physical risk to child; (2) minimising psychosocial risk to child; (3) preserving potential for fertility; (4) preserving or promoting capacity to have satisfying sexual relations; (5) leaving options open for the future, and (6) respecting the parents’ wishes and beliefs.

Keywords:
Disorders of sex development, Ambiguous genitalia, Intersex, Sex ambiguity, Genitourinary anomalies, Gonads, Birth defects, Childhood/paediatric, Ethics, Gender
1.
Halifax Resolutions. 2009; Available from: http://www.lawrights.asn.au/index.php? option=com_content&view=article&id= 76&Itemid=109.
2.
Hughes IA, et al: Consensus statement on management of intersex disorders. Arch Dis Child 2006;91:554–563.
3.
Hamerton JL, et al: A cytogenetic survey of 14,069 newborn infants. I. Incidence of chromosome abnormalities. Clin Genet 1975;8:223–243.
4.
Sax L: How common is intersex? A response to Anne Fausto-Sterling. J Sex Res 2002;39:174–178.
5.
Schutzmann K, et al: Psychological distress, self-harming behavior, and suicidal tendencies in adults with disorders of sex development. Arch Sex Behav 2009;38:16–33.
6.
Dreger AD (ed): The Age of Ethics. Intersex. Ann Arbor, University of Michigan, 1999.
7.
Chase C: Surgical progress is not the answer to intersexuality. J Clin Ethics 1998;9:385–392.
8.
Groveman SA: The Hanukkah bush: ethical implications in the clinical management of intersex. J Clin Ethics 1998;9:356–359.
9.
Diamond M: Intersexuality: recommendations for management. Arch Sex Behav 1998;27:634–641.
10.
Special Issue. J Clin Ethics 1998;9:337–420.
11.
Spriggs M, Savulescu J: The ethics of surgically assigning sex for intersex children; in Benatar D (ed): Cutting to the Core: Exploring the Ethics of Contested Surgeries. Lanham, Rowman & Littlefield, 2006.
12.
Hester JD: Intersex(es) and informed consent: how physicians’ rhetoric constrains choice. Theor Med Bioeth 2004;25:21–49.
13.
Karkazis K: Fixing Sex. Intersex, Medical Authority and Lived Experience. Durham, Duke University Press, 2008.
14.
Wiesemann C, et al: Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents. Eur J Pediatr 2010;169:671–679.
15.
Beauchamp TL, Childress JF: Principles of Biomedical Ethics, ed 6. Oxford, Oxford University Press, 2009.
16.
Rawls J: A Theory of Justice. Oxford, Oxford University Press, 1972.
17.
Friedman RL: Children, Families and Health Care Decision-Making. Oxford, Clarendon Press, 1998.
18.
Pinnock R, Crosthwaite J: When parents refuse consent to treatment for children and young persons. J Paediatr Child Health 2005;41:369–373.
19.
Diekema DS: Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth 2004;25:243–264.
20.
Dresser R: Standards for family decisions: replacing best interests with harm prevention. Am J Bioeth 2003;3:54–55.
21.
Jonas M: The baby MB case: medical decision making in the context of uncertain infant suffering. J Med Ethics 2007;33:541–544.
22.
Cools M, et al: Germ cell tumors in the intersex gonad: old paths, new directions, moving frontiers. Endocr Rev 2006;27:468–484.
23.
Falhammar H, et al: Fractures and bone mineral density in adult women with 21-hydroxylase deficiency. J Clin Endocrinol Metab 2007;92:4643–4649.
24.
Gozzi TG, et al: Autopsy diagnosis of 21-hydroxylase deficiency CAH in a case of apparent SIDS. Pediatr Dev Pathol 2005;8:397–401.
25.
Nabhan ZM, Eugster EA: Upper-tract genitourinary malformations in girls with congenital adrenal hyperplasia. Pediatrics 2007;120:e304–e307.
26.
Meyer-Bahlburg HF: Introduction: gender dysphoria and gender change in persons with intersexuality. Arch Sex Behav 2005;34:371–373.
27.
Warne G, Bhatia V: Intersex, East and West; in Sytsma S (ed): Ethics and Intersex. Berlin, Springer, 2006, pp 183–205.
28.
Cousineau TM, Domar AD: Psychological impact of infertility. Best Pract Res Clin Obstet Gynaecol 2007;21:293–308.
© 2010 S. Karger AG, Basel
2010
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.