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      Ethical concerns regarding intersex

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          Abstract

          Sir, We read with great interest, the editorial on intersex published in Indian Journal of Endocrinology and Metabolism.[1] Intersex, also known as disorders of sex development or hermaphroditism, forms an array of conditions characterized by an incompatibility between the development of chromosomal and anatomic sex. They are relatively common, with a prevalence rate as high as 2%.[2] They are divided into four categories, namely 46 XX, 46 XY, true gonadal intersex and undetermined intersex, and include disorders such as congenital adrenal hypoplasia and androgen insensitivity syndrome. Diagnosis usually involves appropriate history taking, physical exam, and investigations such as karyotyping, serum hormone levels, and ultrasound. Symptoms, some of which may not be apparent at birth, include enlarged clitoris, micropenis, or hypospadias. Treatment usually involves hormonal therapy and may require surgery. A host of complications have been found to be associated with intersex, including potential to develop malignancy.[3] Experts differ on the course of management for such patients, with some advocating early correction so that the patient may live a normal life devoid of ambiguity, while others maintaining that the treatment should be delayed as long as the patient remains healthy. A cloud of ethical concerns hovers around intersex. The extent of controversy behind this phenomenon can be judged by the fact that the name “intersex” has attracted a whole lot of raised eyebrows in the past. This is particularly relevant to the subcontinental setups, where intersex conditions are met with a higher degree of criticism from social circles. Gender assignment/reassignment for such patients has always been a hot topic of debate, as complications after such surgeries may prove fatal.[4] The “Consensus Statement on Management of Intersex Disorders” of 2006 laid down the guiding principles for the nomenclature, diagnosis and management of intersex disorders, and was aimed at eliminating the controversy around them.[5] However, it not go into sufficient detail to resolve all treatment dilemmas, and in any case, it did not end controversy but, instead, actually itself became the focus of controversy. Nevertheless, it was an essential step in elaborating management protocols for intersex conditions. Majority of the cases remain undiagnosed. Such incidents result either from a lack of availability of proper diagnostic tools at an earlier stage, or from a disparity in the provision of healthcare in our setup. There is a dire need of the promotion of awareness regarding this topic, with the formulation of official guidelines for the ethical management of such cases, as literature provides limited and often conflicting evidence in this regard.

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          Most cited references5

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          Consensus statement on management of intersex disorders.

          I A Hughes (2005)
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            How sexually dimorphic are we? Review and synthesis.

            The belief that Homo sapiens is absolutely dimorphic with the respect to sex chromosome composition, gonadal structure, hormone levels, and the structure of the internal genital duct systems and external genitalia, derives from the platonic ideal that for each sex there is a single, universally correct developmental pathway and outcome. We surveyed the medical literature from 1955 to the present for studies of the frequency of deviation from the ideal male or female. We conclude that this frequency may be as high as 2% of live births. The frequency of individuals receiving "corrective" genital surgery, however, probably runs between 1 and 2 per 1,000 live births (0.1-0.2%). Am. J. Hum. Biol. 12:151-166, 2000. Copyright 2000 Wiley-Liss, Inc.
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              Intersex genetic anomalies with malignant potential.

              Mutations in genes contributing to sexual determination and differentiation can cause clinical syndromes with potential for the development of malignant tumors. This article focuses on intersex disorders requiring surveillance for and/or operation to prevent or treat malignancies. Classification of intersex disorders into risk groups gives guidance to physicians about children who are vulnerable to malignant degeneration of the gonads or kidneys. The gonads most at risk are both dysgenetic and intra-abdominal, and early gonadectomies are recommended as malignancies have been reported in infancy. Predominant risk groups include syndromes of gonadal dysgenesis and Ullrich-Turner syndrome. Partial gonadectomy is feasible in true hermaphrodites commensurate with sex of rearing. Histologically normal intra-abdominal gonads may be left through puberty (androgen insensitivity syndromes). A palpably normal descended gonad in a child with a Y chromosome can be observed if the child is reared as male. Certain intersex syndromes with splice variants of the WT1 gene are susceptible to Wilms' tumors (Frasier and Denys-Drash syndromes). Prevention or early recognition of malignancy in intersex disorders requires knowledge of the risk factors including dysgenetic gonads, a Y chromosome with intra-abdominal gonads and dysgenetic syndromes with WT1 gene splice variants. This paper describes the evolution toward laparoscopic gonadectomy in intersex patients, as a means to remove abnormal gonads and associated ductal structures as dictated by the disease or syndrome.
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                Author and article information

                Journal
                Indian J Endocrinol Metab
                Indian J Endocrinol Metab
                IJEM
                Indian Journal of Endocrinology and Metabolism
                Medknow Publications & Media Pvt Ltd (India )
                2230-8210
                2230-9500
                May-Jun 2013
                : 17
                : 3
                : 533-534
                Affiliations
                [1] Medical Students, Dow Medical College, Dow University of Health, Sciences, Baba e Urdu Road, Karachi, Pakistan
                [1 ] Medical Student, Liaquat National Medical College, M A Jinnah Road, Karachi, Pakistan
                Author notes
                Corresponding Author: Mr. Asfandyar Sheikh, Dow Medical College, Dow University of Health Sciences, House # C2, Block R, North Nazimabad, Karachi, Pakistan. E-mail: asfandyarsheikh@ 123456gmail.com
                Article
                IJEM-17-533
                10.4103/2230-8210.111684
                3712393
                23869319
                b71fd2a3-c9f8-4e8f-935f-e8ebcff17c1f
                Copyright: © Indian Journal of Endocrinology and Metabolism

                This is an open-access article distributed under the terms of the Creative Commons Attribution-Noncommercial-Share Alike 3.0 Unported, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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                Categories
                Letters to the Editor

                Endocrinology & Diabetes
                Endocrinology & Diabetes

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