Abstract
The Fifth World Congress on Family Law and Children’s Rights (“Halifax Resolutions” (2009) from http://www.lawrights.asn.au/index.php?option=com_content&view=article&id=76&Itemid=109) adopted a resolution endorsing a set of ethical guidelines for the management of infants and children with DSD (2009), based on the ethical principles developed by our group. In this chapter, we outline these principles and explain their basis. The principles are intended as an ethical foundation for treatment decisions for DSD, especially regarding type and timing of genital surgery for infants and young children. These principles were formulated by an analytic review of clinicians’ 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.
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References
Beauchamp TL, Childress JF. Principles of biomedical ethics. Oxford: Oxford University Press; 2009.
Bessiene L, Lombes M, Bouvattier C. Differences of sex development (DSD): controversies and challenges. Ann Endocrinol (Paris). 2018;79(Suppl 1):S22–30.
Buchanan Allen E, Brock DW. Deciding for others: the ethics of surrogate decision making. Cambridge: Cambridge University Press; 1998.
Carpenter M. The human rights of intersex people: addressing harmful practices and rhetoric of change. Reprod Health Matters. 2016;24(47):74–84.
Chase C. Surgical progress is not the answer to intersexuality. J Clin Ethics. 1998;9(4):385–92.
Cools M, Drop SL, Wolffenbuttel KP, et al. Germ cell tumors in the intersex gonad: old paths, new directions, moving frontiers. Endocr Rev. 2006;27(5):468–84.
Cousineau TM, Domar AD. Psychological impact of infertility. Best Pract Res Clin Obstet Gynaecol. 2007;21(2):293–308.
Daaboul J, Frader J. Ethics and the management of the patient with intersex: a middle way. J Pediatr Endocrinol Metab. 2001;14(9):1575–83.
Davis G. The power in a name: diagnostic terminology and diverse experiences. Psychology & Sexuality. 2013;5(1):15–27.
Diamond M. Intersexuality: recommendations for management. Arch Sex Behav. 1998;27(6):634–41.
Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth. 2004;25(4):243–64.
Dresser R. Standards for family decisions: replacing best interests with harm prevention. Am J Bioeth. 2003;3(2):54–5.
Falhammar H, Filipsson H, Holmdahl G, et al. Fractures and bone mineral density in adult women with 21-hydroxylase deficiency. J Clin Endocrinol Metab. 2007;92(12):4643–9.
Feder EK, Karkazis K. What’s in a name? The controversy over “disorders of sex development”. Hast Cent Rep. 2008;38(5):33–6.
Friedman RL. Children, families and health care decision-making. Oxford: Clarendon Press; 1998.
Gillam L. Fifty years of paediatric ethics. J Paediatr Child Health. 2015;51(1):8–11.
Gillam LH, Hewitt JK, Warne GL. Ethical principles an essential part of process in DSD care. Horm Res Paediatr. 2011;76(5):367–8.
Gold H, Hall G, Gillam LH. The role and function of a paediatric clinical ethics service - experiences at the Royal Children’s Hospital, Melbourne. J Paediatr Child Health. 2011;47:632–6.
Gozzi TG, Harris NP, McGown IN, et al. Autopsy diagnosis of 21-hydroxylase deficiency CAH in a case of apparent SIDS. Pediatr Dev Pathol. 2005;8(3):397–401.
Groveman SA. The Hanukkah bush: ethical implications in the clinical management of intersex. J Clin Ethics. 1998;9(4):356–9.
Halifax Resolutions from http://www.lawrights.asn.au/index.php?option=com_content&view=article&id=76&Itemid=109 2009.
Hester JD. Intersex(es) and informed consent: how physicians’ rhetoric constrains choice. Theor Med Bioeth. 2004;25(1):21–49.
Hughes IA, Houk C, Ahmed SF, et al. Consensus statement on management of intersex disorders. Arch Dis Child. 2006;91(7):554–63.
Jonas M. The baby MB case: medical decision making in the context of uncertain infant suffering. J Med Ethics. 2007;33(9):541–4.
Karkazis K. Fixing sex. Intersex, medical authority and lived experience. Durham, NC: Duke University Press; 2008.
Meyer-Bahlburg HF. Introduction: gender dysphoria and gender change in persons with intersexuality. Arch Sex Behav. 2005;34(4):371–3.
Nabhan ZM, Eugster EA. Upper-tract genitourinary malformations in girls with congenital adrenal hyperplasia. Pediatrics. 2007;120(2):e304–7.
Pinnock R, Crosthwaite J. When parents refuse consent to treatment for children and young persons. J Paediatr Child Health. 2005;41(7):369–73.
Rawls J. A theory of justice. Oxford: Oxford University Press; 1972.
Reiner WG. Special issue. J Clin Ethics. 1998;9(4):337–420.
Ross LF. Health care decision making by children - is it in their best interest? Hast Cent Rep. 1997;27(6)
Schutzmann K, Brinkmann L, Schacht M, et al. Psychological distress, self-harming behavior, and suicidal tendencies in adults with disorders of sex development. Arch Sex Behav. 2009;38(1):16–33.
Schweizer K, Brunner F, Gedrose B, et al. Coping with diverse sex development: treatment experiences and psychosocial support during childhood and adolescence and adult well-being. J Pediatr Psychol. 2017;42(5):504–19.
Spriggs M, Savulescu J. The ethics of surgically assigning sex for intersex children. In: Benatar D, editor. Cutting to the core: exploring the ethics of contested surgeries. Lanham, MD: Rowman & Littlefield; 2006.
Warne G, Bhatia V. Intersex, east and west. In: Sytsma S, editor. Ethics and intersex. Dordrecht: Springer; 2006. p. 183–205.
Wiesemann C, Ude-Koeller S, Sinnecker GH, 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(6):671–9.
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With thanks and acknowledgements to the authors who had been involved in the first edition of this chapter: Dr. Jacqueline Hewitt, Professor Garry L. Warne AM.
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Gillam, L. (2020). Ethical Principles for the Management of DSD. In: Hutson, J., Grover, S., O'Connell, M., Bouty, A., Hanna, C. (eds) Disorders|Differences of Sex Development. Springer, Singapore. https://doi.org/10.1007/978-981-13-7864-5_15
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