Abstract
Management of newborns with disorders of sex development (DSD), especially in deciding the need for a sex assignment surgery, is a complex matter. It is associated with many bioethical issues, such as concerns about the rights and welfare of the newborns and the reliability of parents’ consent to the paternalistic disposition of physicians in making the best decisions. This paper, containing interviews with six medical experts and three religious’ experts, aims to raise awareness of the multidisciplinary approach, which uses a combination of medicine, religion, and ethics in managing children with DSD, particularly in Malaysia, to avoid unnecessary psychological, biological, emotional, and societal ramifications.
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References
Al Jurayyan, N. A. (2011). Disorders of sex development: Diagnostic approaches and management options-an Islamic perspective. Malaysian Journal of Medical Science, 18, 4–12.
Atiyyah, A. A. Y. (1969). Hukm al-Mirath fi al-Shari’ah al-Islamiyyah. Dar al-Nadir li al-Taha’ah wa al-Nashr.
Badran, B. A. A (1985). Al-Mawarith wa al-Wasiyyah wa al-Hibah fi al-Shari’ah al-Islamiyyah wa al-Qanun wa Nusus al-Qawanin al-Sadirah li Shu’nihu. Mu’assasah Shabab al-Jami’ah.
Bluebond-Langner, R., & Redett, R. J. (2011). Phalloplasty in complete aphallia and ambiguous genitalia. In Seminars in plastic surgery (Vol. 25, No. 3, pp. 196–205). Thieme Medical Publishers. https://doi.org/10.1055/s-0031-1281489
Boyce, C., & Neale, P. (2006). Conducting in-depth interviews: A guide for designing and conducting in-depth interviews for evaluation input. Pathfinder International.
Brain, C. E., Creighton, S. M., Mushtaq, I., Carmichael, P. A., Barnicoat, A., Honour, J. W., Larcher, V., & Achermann, J. C. (2010). Holistic management of DSD. Best Practice & Research Clinical Endocrinology & Metabolism, 24(2), 335–354. https://doi.org/10.1016/j.beem.2010.01.006
Busetto, L., Wick, W., & Gumbinger, C. (2020). How to use and assess qualitative research methods. Neurological Research and Practice. https://doi.org/10.1186/s42466-020-00059-z
Butler, J., Guillory, J., & Thomas, K. (2000). What’s left of theory? Routledge.
Catlin, A., Áskelsdóttir, B., Conroy, S., & Rempel, G. (2008). From diagnosis to birth: parents’ experience when expecting a child with congenital anomaly. Advances in Neonatal Care, 8(6), 348–354. https://doi.org/10.1097/01.ANC.0000342768.94734.23
Chase, C. (1998). Surgical progress is not the answer to intersexuality. Journal of Clinical Ethics, 9(4), 385–391.
Chase, C. (1999). Rethinking treatment for ambiguous genitalia. Pediatric Nursing, 25(4), 451–451.
Creighton, S. M., & Liao, L. M. (2004). Changing attitudes to sex assignment in intersex. British Journal of Urology International, 93(5), 659–664. https://doi.org/10.1111/j.1464-410X.2003.04694.x
Creighton, S. M., Minto, C. L., & Steele, S. J. (2001). Objective cosmetic and anatomical outcomes at adolescence of feminising surgery for ambiguous genitalia done in childhood. The Lancet, 358(9276), 124–125. https://doi.org/10.1016/S0140-6736(01)05343-0
Crouch, R. M. (1987). Disorders of sexual differentiations. Medicine North America, 14, 2632–2647.
Dessouky, N. (2001). Gender assignment for children with intersex problems: An Egyptian perspective. Egyptian Journal of Surgery, 20(2), 499–515.
Diamond, M., & Sigmundson, H. K. (1997). Sex reassignment at birth: Long-term review and clinical implications. Archives of Pediatrics & Adolescent Medicine, 151(3), 298–304. https://doi.org/10.1001/archpedi.1997.02170400084015
Dredger, A. D., & Herdon, A. M. (2009). Progress and politics in the intersex rights movement: Feminist theory in action. A Journal of Lesbian and Gay Studies, 15(2), 199–224. https://doi.org/10.1215/10642684-2008-134
Dreger, A. D. (1998). Ambiguous sex—Or ambivalent medicine? Ethical issues in the treatment of intersexuality. Hastings Center Report, 28(3), 24–35. https://doi.org/10.2307/3528648
Duguid, A., Morrison, S., Robertson, A., Chalmers, J., Youngson, G., Ahmed, S. F., & Network, S. G. A. (2007). The psychological impact of genital anomalies on the parents of affected children. Acta Paediatrica, 96(3), 348–352. https://doi.org/10.1111/j.1651-2227.2006.00112.x
Dworkin, S. L. (2012). Sample size policy for qualitative studies using in-depth interviews. Archives of Sexual Behavior, 41, 1319–1320. https://doi.org/10.1007/s10508-012-0016-6
El-Sherbiny, M. (2013). Disorders of sexual differentiation: II. Diagnosis and treatment. Arab Journal of Urology, 11(1), 27–32. https://doi.org/10.1016/j.aju.2012.11.008
Family Health Development Division Ministry of Health Malaysia. (2017). Garispanduan pengendalian masalah kesihatan gender di Klinik Kesihatan (Gender health problem management guidelines at Health Clinics). Kementerian Kesihatan Malaysia.
Fausto-Sterling, A. (2000). Sexing the body: Gender politics and the construction of sexuality. Basic Books.
Feder, E. K., & Karkazis, K. (2008). What‘s in a name? The controversy over disorders of sex development. Hastings Center Report, 38(5), 35. https://doi.org/10.1353/hcr.0.0062
Garland, F., & Travis, M. (2018). Legislating intersex equality: Building the resilience of intersex people through law. Legal Studies, 38(4), 587–606. https://doi.org/10.1017/lst.2018.17
Gillam, L. H., Hewitt, J. K., & Warne, G. L. (2010). Ethical principles for the management of infants with disorders of sex development. Hormone Research in Paediatrics, 74(6), 412–418. https://doi.org/10.1159/000316940
Göllü, G., Yıldız, R. V., Bingol-Kologlu, M., Yagmurlu, A., Senyücel, M. F., Aktug, T., Gökcora, H., & Dindar, H. (2007). Ambiguous genitalia: an overview of 17 years’ experience. Journal of Pediatric Surgery, 42(5), 840–844. https://doi.org/10.1016/j.jpedsurg.2006.12.036
Gough, B., Weyman, N., Alderson, J., Butler, G., & Stoner, M. (2008). ‘They do not have a word’: The parental quest to locate a ‘true sex’ for their intersex children. Psychology Health, 23(4), 493–507. https://doi.org/10.1080/14768320601176170
Hamid, A., Tai, B. A., Tey, N. P., & Subbiah, M. (1988). Marriage family formation in Peninsular Malaysia: Analytic Report on the 1984/85 Malaysian Population and Family Survey. National Population and Family Development Board.
Hermer, L. D. (2002). Paradigms revised: Intersex children, bioethics and the law. Annals Health Law, 11, 195–236.
Houk, C. P., & Lee, P. A. (2010). Approach to assigning gender in 46, XX congenital adrenal hyperplasia with male external genitalia: replacing dogmatism with pragmatism. Journal of Clinical Endocrinology & Metabolism, 95(10), 4501–4508. https://doi.org/10.1210/jc.20100714
Hughes, I. A., Houk, C., Ahmed, S. F., Lee, P. A., & Society, LWPE. (2006). Consensus statement on management of intersex disorders. Journal of Pediatric Urology, 2(3), 148–162. https://doi.org/10.1016/j.jpurol.2006.03.004
Ishak, M. S., & Haneef, S. S. (2014). Sex reassignment technology: the dilemma of transsexuals in Islam and Christianity. Journal of Religious Health, 53(2), 520–537. https://doi.org/10.1007/s10943-012-9656-z
Ismail, M. I. H., Ibrahim, M. H., Phak, N. H., & Thomas, T. (2019). Paediatric protocols for Malaysian hospitals (3rd edition). Kementerian Kesihatan Malaysia. Malaysian Paediatric Association. https://mpaeds.my/wp-content/uploads/2018/04/Paediatric-Protocols-for-Malaysian-Hospitals-Third-Edition.pdf
Kaas, E., & Kogan, S. J. (1996). Timing of elective surgery on the genitalia of male children with particular reference to the risks, benefits and psychological effects of surgery and anaesthesia. Pediatrics, 97(4), 590–594.
Kamali, M. H. (2003). Principles of Islamic jurisprudence Cambridge. Islamic Texts Society.
Kessler, S. J. (1998). Lessons from the intersexed. Rutgers University Press.
Kipnis, K., & Diamond, M. (1998). Paediatrics ethics and the surgical assignment of sex. Journal of Clinical Ethics, 9(4), 398–410.
Kuhnle, U., & Krahl, W. (2002). The impact of culture on sex assignment and gender development in intersex patients. Perspectives Biology and Medical, 45, 85–103. https://doi.org/10.1353/pbm.2002.0011
Lathrop, B. L., Cheney, T. B., & Hayman, A. B. (2014). Ethical decision-making in the dilemma of the intersex infant. Issues in Comprehensive Pediatric Nursing, 37(1), 25–38. https://doi.org/10.3109/01460862.2013.855842
Lee, P. A., Houk, C. P., Ahmed, S. F., & Hughes, I. A. (2006). Consensus statement on management of intersex disorders. Pediatrics, 118(2), e488–e500. https://doi.org/10.1542/peds.2006-0738
McGrath, C., Palmgren, P. J., & Liljedahl, M. (2019). Twelve tips for conducting qualitative research interviews. Medical Teacher, 41(9), 1002–1006. https://doi.org/10.1080/0142159X.2018.1497149
Meyer-Bahlburg, H. F., Migeon, C. J., Berkovitz, G. D., Gearhart, J. P., Dolezal, C., & Wisniewski, A. B. (2004). Attitudes of adult 46, XY intersex persons to clinical management policies. Journal of Urology, 171, 1615–1619. https://doi.org/10.1097/01.ju.0000117761.94734.b7
Money, J. (1994). Sex errors of the body and related syndromes: A guide to counseling children, adolescents, and their families (2nd ed.). P.H. Brookes.
Nasohah, Z., Laluddin, H., Kusrin, Z. M., & Muwazir, R. (2012). Standardisation of fatwa in Malaysia: Management and problems. Advances in Natural and Applied Sciences, 6(6), 923–930.
Noor Laily, A. B., Tan, B. A., & Tey, N. P. (1984). Preference for number and sex of children in the rural areas of Peninsular Malaysia. Southeast Asian Journal of Social Science, 12(2), 18–35. https://doi.org/10.1163/080382484X00139
Ostrer, H. (2014). Disorders of sex development (DSDs): An update. The Journal of Clinical Endocrinology & Metabolism, 99(5), 1503–1509. https://doi.org/10.1210/jc.2013-3690
Özbey, H., & Etker, S. (2013). Disorders of sexual development in a cultural context. Arab Journal of Urology, 11(1), 33–39. https://doi.org/10.1016/j.aju.2012.12.003
Panda, S. S., Bajpai, M., Sharma, N., & Singh, A. (2013). Effect of medical therapy on clitoral length in patients with congenital adrenal hyperplasia (CAH). Journal of Progress in Paediatric, 16(1), 5–7.
Reiner, W. G. (1996). Case study: Sex reassignment in a teenage girl. Journal of the American Academy of Child & Adolescent Psychiatry, 35(6), 799–803. https://doi.org/10.1097/00004583-199606000-00020
Reis, E. (2007). Divergence or disorder? The politics of naming intersex. Perspectives in Biology and Medicine, 50(4), 535–543. https://doi.org/10.1353/pbm.2007.0054
Rispler-Chaim, V. (2007). People with disabilities and the performance of religious duties. In V. Rispler-Chaim (Ed.), Disability in Islamic law (pp. 19–39). International Library of Ethics, Law, and the New Medicine, Vol 32. Springer. https://doi.org/10.1007/1-4020-5052-6_1
Sanders, C., Carter, B., & Goodacre, L. (2011). Searching for harmony: parents’ narratives about their child’s genital ambiguity and reconstructive genital surgeries in childhood. Journal of Advanced Nursing, 67(10), 2220–2230. https://doi.org/10.1111/j.1365-2648.2011.05617.x
Slijper, F. M., & Drop, S. L. (1998). Long-term psychological evaluation of intersex children. Archives of Sexual Behavior, 27(2), 125–144. https://doi.org/10.1023/A:1018670129611
Warne, G. L., & Raza, J. (2008). Disorders of sex development (DSDs), their presentation and management in different cultures. Reviews in Endocrine and Metabolic Disorders, 9(3), 227–236. https://doi.org/10.1007/s11154-008-9084-2
Wilson, B. E., & Reiner, W. G. (1998). Management of intersex: A shifting paradigm. The Journal of Clinical Ethics, 9(4), 360–369.
Wiesemann, C., Ude-Koeller, S., Sinnecker, G. H., & Thyen, U. (2010). Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents. European Journal of Pediatrics, 169(6), 671–679. https://doi.org/10.1007/s00431-009-1086-x
Zainuddin, A. A., & Abdullah Mahdy, Z. (2016). The Islamic perspectives of gender related issues in the management of patients with disorders of sexual development. Archive of Sexual Behavior, 46(2), 353–360. https://doi.org/10.1007/s10508-016-0754-y
Zainuddin, A. A., Grover, S. R., Ghani, N., Rasat, R., Ling, W., Mahdy, Z., & Siraj, H. (2012). Islamic perspectives in counselling muslim patients with disorders of sex development (DSD) with gender-related issues. International Journal of Obstetrics and Gynaecology, 119, 133–133. https://doi.org/10.1007/s10508-016-0754-y
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Financial support for this study was provided by the University of Malaya’s research grant: BK035-2015. The funding agreements ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report.
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MSM and ZAH collected the data. MSM performed an initial analysis and drafted the article. SAA has thoroughly reviewed the final draft of the manuscript. All authors discussed and reviewed themes and their application to the broader field. All authors contributed, reviewed, provided critical input, and approved the final manuscript.
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This study was approved by the Malaysian Medical Ethics and Research Committee (MERC), and the study’s identification number is NMRR-09–999-4920. Informed consent was obtained and approved by all participants.
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Mohamed, M.S., Halim, Z.A. & Azizan, S.A. Management of Gender Determination of Newborns and Children with Disorders of Sex Development Using a Multidisciplinary Approach: An Exploratory Study of Islamic Perspective in Malaysia. J Relig Health 62, 797–818 (2023). https://doi.org/10.1007/s10943-022-01657-8
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DOI: https://doi.org/10.1007/s10943-022-01657-8