HHr Health and Human Journal

Intersex Variations, , and the HHR_final_logo_alone.indd 1 10/19/15 10:53 AM International Classification of Diseases

Abstract

Over time, the World Health Organization (WHO) has reviewed and removed pathologizing classifications

and codes associated with sexual and minorities from the International Classification of

Diseases (ICD). However, classifications associated with variations, congenital variations

in characteristics or differences of sex development, remain pathologized. The ICD-11 introduces

additional and pathologizing normative language to describe these as “disorders of sex development.”

Current materials in the ICD-11 Foundation also specify, or are associated with, unnecessary medical

procedures that fail to meet human rights norms documented by the WHO itself and Treaty Monitoring

Bodies. This includes codes that require and gonadectomies associated with gender

assignment, where either masculinizing or feminizing surgery is specified depending upon technical

and heteronormative expectations for surgical outcomes. Such interventions lack evidence. Human

rights defenders and institutions regard these interventions as harmful practices and violations of rights

to bodily integrity, non-, , , and freedom from , ill-

treatment, and experimentation. WHO should modify ICD-11 codes by introducing neutral terminology

and by ensuring that all relevant codes do not specify practices that violate human rights.

Morgan Carpenter is a senior advisor at GATE, a co-executive director of Australia, and a graduate and PhD candidate in bioethics at Sydney Health Ethics in the Faculty of Medicine and Health, , Australia. This article was produced in the context of the GATE initiative on the process of revision and reform of the International Classification of Diseases. Please address correspondence to the author at [email protected]. Competing interests: None declared. Copyright © 2018 Carpenter. This is an open access article distributed under the terms of the Creative Commons Attribution Non- Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.

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Introduction material from an ICD-11 Foundation Component into a first release of the ICD-11 for Mortality and In 2015, the World Health Organization (WHO) Morbidity Statistics (ICD-11-MMS).5 The World published a paper on sexual health, human rights, Health Assembly is expected to approve the ICD-11 and the law. This paper described sexual health as “a in May 2019, and further changes are likely to occur state of physical, emotional, mental and social well- prior to this approval. being in relation to sexuality” where “achievement The ICD-11 has reconceptualized or deleted of the highest attainable standard of sexual health” codes relating to sexual and gender minorities. is linked to enjoyment of the rights to non- Remaining diagnostic classifications related to discrimination, privacy, freedom from violence have been deleted entirely. In and coercion, and rights to education, information, relation to gender minorities, Chou and others and access to health services.1 WHO described how stated in 2015: harmonizing laws and regulations with human rights standards can “foster the promotion of sexu- The ICD-10 categories ‘Transsexualism’ and ‘Gender al health” while laws that contradict human rights Identity Disorder of Childhood’ have been proposed principles have a negative impact.2 It concluded by to be re-conceptualized in ICD-11 as ‘Gender advising that “States have obligations to bring their Incongruence of Adolescence and Adulthood’ and 6 laws and regulations that affect sexual health into ‘Gender Incongruence of Childhood’, respectively. alignment with human rights laws and standards.”3 In this paper, I argue that these same principles Chou notes that broader changes have also been apply to WHO’s International Classification of Dis- introduced, including a new chapter on sexual 7 eases (ICD) in relation to the impact of ICD codes health. The new chapter brings together a range of on the health and well-being of people born with sexual health issues, including codes enabling the intersex variations. I conclude that WHO should classification of genital mutilation, unwant- bring ICD classifications and standards into line ed , sexually transmitted infections, and with existing WHO and UN human rights stan- . dards and agreements applicable to the situation of This reconceptualization of the ways in intersex people. which concepts relating to the health of sexual and gender minorities are classified has not, however, extended to concepts relating to intersex persons, Background that is, persons with congenital variations in sex In recent years, Topic Advisory Groups established characteristics/differences of sex development. and administered by WHO on genito-urinary This population is sometimes aggregated with , and on other matters, have other sexual and gender minorities to comprise an engaged in a re-evaluation of classifications and “LGBTI” community, including in publications by codes associated with sexual and reproductive WHO and other international institutions.8 Rather health, including the sexual health of both sexual than ending the unnecessary pathologization of all and gender minorities. The trend has been to LGBTI populations, the ICD-11 layers pathologizing depathologize codes associated with sexual new language describing such variations as minorities, reflecting both human rights norms, “disorders of sex development” (DSD) onto existing and the poor-quality evidence and social rationales language such as “pseudo-” that that justified their existence.4 Thus, though a code has often been critiqued as pejorative.9 As I will for egodystonic sexual orientation was retained in later show, current ICD Foundation codes specify the ICD with endorsement of the ICD-10 in 1990, and are associated with unnecessary medical , per se, was removed. procedures that fail to meet human rights norms The ICD-11 was formally introduced on detailed by WHO and other UN organizations, June 18, 2018, drawing a structure and a subset of and recommendations of UN Treaty Monitoring

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Bodies, and are not underpinned by an appropriate The Office of the High Commissioner for Human evidence base. Rights, the Inter-American Commission on Hu- man Rights, the Human Rights Commissioner Umbrella terms of the and other human rights experts have recommended that medical codes Objections to the language of “disorders of sex that pathologize all variations of sex characteristics development” began immediately after it was clin- should be reviewed and modified, to “ensure that ically adopted in 2006 and have continued to the intersex persons can effectively enjoy the highest present time.10 attainable standard of health and other human Populations described by the term “disorders rights.”16 These echo recommendations to WHO of sex development” (DSD) find this language from intersex human rights defenders.17 pejorative and inappropriate, a finding borne out In a 2016 joint statement, multiple UN Treaty consistently in research by clinical teams and Monitoring Bodies, Special Rapporteurs, the Office peer support bodies. This language unnecessarily of the High Commissioner for Human Rights, Af- pathologizes often benign characteristics. Amongst rican Commission on Human and Peoples’ Rights, persons seeking healthcare, whether due to in- Council of Europe, Office of the Commissioner for nate or iatrogenic causes, a 2017 study found that Human Rights, and the Inter-American Commis- DSD nomenclature may “negatively affect access sion on Human Rights called for the combatting to healthcare and research”: “the use of DSD and of root causes of human rights “violations such as related terms is causing distress and avoidance of harmful , stigma and pathologization,” medical care among some affected individuals and and so, “it is critical to strengthen the integration caregivers.”11 of these human rights principles in standards and The research team found these findings “con- protocols issued by regulatory and professional sistent with previous studies that demonstrated bodies.”18 Changing nomenclature from “disorders negative perceptions of DSD nomenclature.”12 of sex development” to neutral terminology is nec- Among those, a CARES Foundation survey on essary to achieve this goal. issues relating to congenital adrenal hyperplasia An umbrella term is necessary. Variations of in the US found that “more than half of those sex characteristics are known to be heterogeneous, surveyed said they would not choose to receive with at least 40 different known variations; there is care from centers or participate in research studies also wide agreement that a significant proportion that use the term DSD.”13 US youth and advocacy of people born with variations of sex characteristics organization interACT and Australian and New do not have a specific or clear diagnosis.19 Aggrega- Zealand advocates have taken similar positions.14 tion facilitates the provision of services for people Australian research based on a survey of 272 with otherwise disparate variations of sex charac- people born with atypical sex characteristics found teristics.20 Individuals have frequently also received that participants engaged in code-switching: 3% multiple different diagnostic labels, not only due to used the term “disorders of sex development” to change in nomenclature over time, but also due to describe themselves, while 21% used the term to diagnostic error and the availability of new genetic access medical services.15 This shows not only that tests. Umbrella terms help to establish continuity. such individuals feel it necessary to disorder them- An umbrella term can also help individuals selves in order to access appropriate care, but also without a clear genetic diagnosis find peers and that clinicians may not be aware of or exposed to persons with shared lived experience. In situations the terms that individuals prefer to use. where individual variations of sex characteristics Human rights institutions have linked the are statistically rare or uncommon, umbrella terms terminology used to describe innate variations of provide a vital connection with other individuals sex characteristics with human rights violations. with related or common experience. By helping in-

DECEMBER 2018 VOLUME 20 NUMBER 2 Health and Human Rights Journal 207 M. Carpenter / papers, 205-214 dividuals to find common ground, umbrella terms Specific ICD codes also help facilitate collective action, for example, to tackle shame, stigma, and discrimination. Individual codes in the ICD-11-MMS and ICD-11 Indeed, in recent decades, it is the term “inter- Foundation typically contain both a title and de- sex,” along with specific diagnostic codes, that have scription. In some cases, additional information is provided. In relation to a range of codes relating facilitated peer connection and collective action, in to intersex variations, these details in the ICD 11 contrast with the term “disorders of sex develop- Foundation provide the preconditions for medical- ment.” The term “intersex” is increasingly popular, ly unnecessary and often irreversible interventions. with intersex communities, advocacy groups, and Further, for some ICD codes, additional informa- peer support groups now developing across the tion attached to those codes explicitly specifies such globe, and this can be expected to continue. Such interventions. Consequently, of a neutral peer support, advocacy, and other community umbrella term alone is not sufficient; changes to groups undertake critical work to support indi- specific codes are also necessary. viduals, tackle stigma associated with being born Forced and coercive medically unnecessary with variations of sex characteristics, tackle mis- interventions on the bodies of intersex children conceptions, combat human rights violations, and may sometimes be described critically or euphe- hold policy makers and practitioners to account. A mistically as “normalization” surgeries, but also proportion of these groups are identified in a 2016 as “corrections,” treatment for “malformations,” clinical update noting that peer support “is a key genital “enhancement,” “genital reconstruction,” component of the 2013–2020 WHO Mental Health “” or “gender assignment,” or Action Plan,” and that routine inclusion of peer “gender reassignment.”24 The procedures involved support is necessary in “clinical care at the earliest may include labiaplasties, , clitoral 21 possible time.” “recession” and other forms of clitoral cutting or Nevertheless, using the term “intersex” in clin- removal, gonadectomies, hypospadias “repairs,” ical settings repathologizes a term increasingly used phalloplasties and other forms of penile augmenta- in social, advocacy, and human rights settings. It tion surgeries, other forms of urogenital surgeries, has become an affirmative term, available irrespec- and prenatal and postnatal hormone treatment.25 tive of diagnostic code, , or legal sex; Associated practices may include dilation, repeat- despite this, and like all stigmatized populations, ed genital examinations, post-surgical sensitivity language is contested, and misunderstandings and testing, and medical photography.26 Many of these 22 instrumentalization affect its acceptance. procedures have been found to be direct violations A term other than “intersex” may recognize of a right to bodily integrity and, when conducted contention regarding terminology, while also without informed consent by the person concerned, acknowledging that persons can acceptably use may be regarded as torture or ill treatment.27 different terms in clinical and social settings. Well The World Health Organization paper on chosen, a change in clinical terminology can help sexual health summarizes concerns regarding narrow the distance between community and the sexual health and rights of intersex persons, clinical organizations. In line with a community distinguishing between “medically unnecessary, submission to WHO, I propose that umbrella often irreversible, interventions” resulting from nomenclature in the ICD-11 be modified from “dis- “so-called sex normalizing procedures” to ensure orders of sex development” to neutral terminology, that children’s bodies “conform to gendered phys- such as “congenital variations of sex characteristics” ical norms” and procedures that “may sometimes or, failing that, “differences of sex development,” be justified in cases of conditions that pose a health a term already used by some intersex people and risk or are considered life-threatening,” noting that organizations, clinicians, and rights institutions.23 some of these may be poorly justified.28

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Multiple intersex variations may be associ- The statements in codes for both 5a-RD2 and ated with specific genital characteristics at birth. 17ß-HSD3 favoring genitoplasties share a heritage In each case, genital appearance may be atypi- evident in a 1993 paper on clinical practices by cal but benign, with that appearance having no Hendricks that shared the idea that: “You can make consequences for physical health.29 Nevertheless, a hole but you can’t build a pole.”33 This rationale descriptions for ICD-11 Foundation codes may is based upon the technical possibilities of surgery, promote or specify surgical intervention to modify but it also reflects heteronormative norms about those sex characteristics. Among these, the ICD-11 physical function: the idea that someone cannot be Foundation codes for congenital adrenal hyperpla- a man if they cannot penetrate a woman, and that sia, 5-alpha-reductase 2 deficiency (5a-RD2), and someone cannot be a woman without being pene- 17-beta-hydroxysteroid dehydrogenase 3 deficiency trated by a man. The same attitudes are also evident (17ß-HSD3) are notable. Each of these variations in narrow expectations for male and female bodies are associated with specific genital characteristics expressed in the idea that “real men” have to be able at birth, and each ICD-11 classification contains to stand to urinate.34 supporting descriptions that promote or explicitly Human rights defenders question those atti- require surgical interventions. tudes as surgical intervention is dictated by social The ICD-11-MMS code for congenital adrenal and cultural factors. Indeed, no potential quality hyperplasia notes that: “Genital anomalies may be of life issues are indicated in the ICD-11 informa- noted at birth in affected ,” while ICD-11 tion, other than those that might be derived from Foundation code information remarks that genital an associated minority status and, in the case of surgery may be required without specifying why or 17ß-HSD3, . In the cases of both 5a-RD2 under what conditions, stating: “Genital anomalies and 17ß-HSD3, genetic deselection is described in females may require surgical intervention(s).”30 as an option. This suggests the possibility of a The ICD-11 Foundation code information for 5a- pre-emptive elimination of bodies with intersex RD2 deficiency remarks that surgery is necessary, with variations in place of surgical intervention, but the type of surgeries dependent on sex assignment neither surgery nor prenatal deselection are ade- and the likely outcomes of masculinizing surgery: quately justified. A series of clinical papers has outlined risks Gender assignment is still debated and must be of gonadal tumors as rationales for monitoring carefully discussed for each patient, depending on gonads in children with 5a-RD2 and 17ß-HSD3. the expected results of masculinizing . For example, a 2006 clinical statement calls for the If female assignment is selected, feminizing genitoplasty and gonadectomy should be performed. monitoring of gonads in children with 17ß-HSD3 35 Prenatal diagnosis is available for the kindred of due to a “medium” risk of gonadal tumors. A affected patients if the causal mutations have been later clinical review reduced the associated risk characterized.31 level.36 However, the mention of gonadectomies in ICD-11 clinical descriptions for both 17ß-HSD3 and The ICD-11 Foundation code information for 5a-RD2 is dependent not on tumor risk but instead 17ß-HSD3 makes similar assertions: on gender assignment. This gendering of gonadec- tomies contradicts assertions made about tumor If the diagnosis is made at birth, gender assignment risk management and highlights the role of gender must be discussed, depending on the expected stereotypes in determining clinical practices. This results of masculinizing genitoplasty. If female gendering of gonadectomies also constrains chil- assignment is selected, feminizing genitoplasty and gonadectomy must be performed. Prenatal diagnosis dren’s future possibilities and choices, including is available for the kindred of affected patients if the those associated with gender identification, and for causal mutations have been characterized. 32 hormone production, and access to novel reproduc-

DECEMBER 2018 VOLUME 20 NUMBER 2 Health and Human Rights Journal 209 M. Carpenter / papers, 205-214 tive technologies. in this case were each predicated on the initial gen- A 2016 Australian legal case provides a specif- der assignment, the timing of the gonadectomy was ic example to illustrate the rationales and gender deliberate: “it will be less psychologically traumatic stereotyping that underpin the content of these for Carla if it is performed before she is able to ICD-11 codes. The case was taken before the understand the nature of the procedure.”39 Yet, at Court of Australia to approve the gonadectomy of a the same time, the heteronormative nature of the 5-year-old child with 17ß-HSD3, described as having gender stereotypes involved in clinical and judicial a “sexual development disorder” (that is, a “disor- decision-making led the judge to comment: “Carla der of sex development”). The case documented the may also require other surgery in the future to judge’s view that a prior clitoral “recession” (a form enable her vaginal cavity to have adequate capacity of clitorectomy) and labioplasty had “enhanced the for sexual intercourse.”40 appearance of her female genitalia.”37 The judgment The evidence in support of these medical also disregarded evidence recommending mon- interventions is lacking. A 2006 clinical statement itoring of gonads, and made no reference to new cited clinician feelings, and a “belief” that early evidence on reduced risks. surgery “relieves parental distress and improves The rationale for the child’s gonadectomy was attachment between parents and child.”41 In the de- substantively comprised of gender stereotypes, ob- cade since, the quality of available evidence has not served by a treating doctor in her multidisciplinary improved. A 2016 clinical review found that there is team and recounted by the judge: no consensus on surgery timing, indications, pro- cedures, or outcome evaluation, and no evidence a. Her parents were able to describe a clear, on the impact of intervention or non-intervention consistent development of a female gender during childhood for the affected person, their identity; family, or society.42 A 2017 Council of Europe bio- b. Her parents supplied photos and other evidence ethics committee report summarized key research that demonstrated that Carla [a pseudonym] identifies as a female; to state that: c. She spoke in an age appropriate manner, and described a range of interests/toys and colours, (1) “quality of life” studies on patients into all of which were stereotypically female, for adulthood are lacking and are “poorly researched”, example, having pink curtains, a Barbie (2) the overall impact on the sexual function on bedspread and campervan, necklaces, lip gloss children surgically altered is “impaired” and (3) the and ‘fairy stations’; claim that gender development requires surgery is a 43 d. She happily wore a floral skirt and shirt with “belief” unsubstantiated by data. glittery sandals and Minnie Mouse underwear and had her long blond hair tied in braids; and The same paper makes a point, directly relevant e. Her parents told Dr S that Carla never tries to to the Family Court case Re: Carla, that there is stand while urinating, never wants to be called no guarantee that “infant surgery will be certain by or referred to in the male pronoun, prefers female toys, clothes and activities over male to coincide with the child’s actual identity, sexual toys, clothes and activities, all of which are interests, and desires for bodily appearance” or typically seen in natal boys and natal girls who function.44 identify as boys.38 Clinicians have argued that the practices doc- umented in Carla’s case and described in the ICD-11 This evidence describes parental descriptions, and no longer take place routinely, but such claims lack culturally specific, socially constructed ideas of evidence, and so lack merit.45 Governments have femininity associated with a child too young to similarly attributed change to clinical practices. For freely articulate a gender identity, for an irrevers- example, the state where Carla lived had previously, ible medical intervention. Given that the surgeries in 2012, offered a reassurance that:

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Previously it was an accepted practice to assign the intervention or surgery, and ensure that the right external genitalia of a child during their childhood, to free, prior, and informed consent to treatment is often through surgical intervention … Research and upheld and that supported decision-making mech- investigation now advises against any irreversible or anisms and strengthened safeguards are provided.52 long-term procedures being performed on intersex children, unless a condition poses a serious risk to • States must ensure that no one is subjected to 46 their health. undocumented medical or surgical treatment during infancy or childhood.53 Similarly, a local clinical organization has suggest- • States must ensure that intersex people’s person- ed “a trend toward consideration of less genital and al integrity and sexual and gonadal surgery” without providing supporting rights are respected.54 evidence.47 The recent nature of the medical history detailed in Carla’s case does not support such as- surances, and nor does the ICD-11 Foundation code These examples indicate a growing consensus by for 17ß-HSD3. international human rights institutions in opposi- tion to unnecessary irreversible surgeries on infants and children with intersex variations. At present, Human rights standards the ICD-11 Foundation code materials specify or In recent years, UN Treaty Monitoring Bodies have otherwise facilitate such practices. responded to testimonies by survivors of such prac- tices provided by institutions and individuals in Reframing intersex-related codes and countries around the world. They have cited Treaty classifications Articles on non-discrimination and protection from torture and experimentation, and on Given demands to review diagnostic terminology and security, privacy, and equality before the law, to avoid unnecessary medicalization, terminology issuing multiple recommendations in relation to in diagnostic codes should be changed to ensure such interventions.48 These include the observa- that it does not predicate surgical interventions. At tions listed below. the same time, individuals able to provide consent need to able to access medical interventions. A more • States must guarantee bodily integrity, autono- neutral language is needed in order to balance these my, and self-determination to intersex children, needs. For example, the ICD-11 classification of and ensure that no one is subjected to unnec- “malformative disorders of sex development” could essary medical treatment during infancy or be replaced with “structural congenital variations childhood.49 of sex characteristics” or “structural differences of sex development.” Descriptions facilitating medical • States must protect intersex persons from vi- interventions based on gender stereotypes or social olence, and harmful practices such as intersex norms should be deleted, including requirements, genital mutilation.50 specifications, or suggestions for surgical interven- • States must adopt legislation to prohibit the per- tion or genetic deselection. formance of surgical or other medical treatment Individuals subjected to unwanted medical on intersex children unless such procedures con- interventions to modify their genitals may suffer stitute an absolute medical necessity, and until consequences including impaired sexual function they reach an age at which they can provide their and sensation, incontinence, scarring, a need for 51 free, prior and informed consent. further surgery, and lifelong hormone treatment.55 • States must repeal all types of legislation, regula- For such persons, the introduction of a new ICD-11 tions, and practices allowing any form of forced code for “intersex genital mutilation” analogous to

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an existing code on female genital mutilation may, pp. 672–79, https://doi.org/10.2471/BLT.14.135541. like the code on female genital mutilation, facilitate 5. World Health Organization, ‘The 11th Revision of access to consequential and reparative treatments. the International Classification of Diseases (ICD-11) Is Due by 2018!’, March 16, 2018. Available at http://www.who.int/ classifications/icd/revision/en/; World Health Organization, Conclusion ‘ICD-11 (Foundation)’, 2018. Available at https://icd.who.int/ dev11/f/en; World Health Organization, ‘ICD-11 for Mortali- Over time, WHO has consistently reviewed and ty and Morbidity Statistics (2018)’, June 18, 2018. Available at removed pathologizing classifications and codes https://icd.who.int/browse11/l-m/en. associated with sexual and gender minorities from 6. D. Chou, S. Cottler, R. Khosla et al., “Sexual health in the International Classification of Diseases (ICD): Implica- the International Classification of Diseases (ICD). tions for measurement and beyond,” Reproductive Health However, classifications associated with intersex Matters 23, no. 46 (November 2015), p. 190. Available at variations, or differences of sex development, https://doi.org/10.1016/j.rhm.2015.11.008. remain pathologized. As a result, the ICD-11 facil- 7. Ibid., p. 187. itates, and specifies, procedures that are regarded 8. United Nations, “Ending violence and discrimination by UN and other institutions as violating human against , , bisexual, and intersex peo- ple,” September 2015. Available at https://www.ohchr.org/en/ rights. Intersex advocates have made multiple col- issues/discrimination/pages/jointlgbtistatement.aspx. 56 laborative submissions to WHO on these issues. 9. A. Dreger, C. Chase, A. Sousa et al., “Changing the WHO should reconsider the introduction of nomenclature/taxonomy for intersex: A scientific and unnecessarily pathologizing language of “disorders clinical rationale”, Journal of Pediatric Endocrinology and of sex development” into the ICD. It should instead Metabolism 18, no. 8 (January 2005). Available at https://doi. adopt alternative language such as “congenital org/10.1515/JPEM.2005.18.8.729. 10. I A Hughes, C. Houk, S. Ahmed et al., “Consen- variations of sex characteristics” or, failing that, sus statement on management of intersex disorders”, “differences of sex development.” Archives of Disease in Childhood 91 (April 19, 2006), pp. Codes and clinical information relating to all 554–63. Available at https://doi.org/10.1136/adc.2006.098319; individual variations in sex characteristics should Consortium on the Management of Disorders of Sex De- be reviewed to ensure that they do not specify or fa- velopment, California Endowment, Arcus Foundation et cilitate interventions that fail to meet human rights al., Clinical Guidelines for the Management of Disorders of norms and that lack adequate supporting evidence. Sex Development in Childhood (Whitehouse Station, N.J.: , 2006), p. ii. Terminology predicating unnecessary medical 11. E. Johnson, I. Rosoklija, C. Finlayson et al., “Attitudes interventions without the consent of the recipient towards ‘disorders of sex development’ nomenclature among should be replaced. affected individuals.” Journal of Pediatric Urology, May 2017, To assist persons subjected to irreversible pp. 1.e1 and 1.e6. Available at https://doi.org/10.1016/j.jpu- medical interventions, the addition of a new code rol.2017.03.035; E. Johnson, I. Rokoklija, C. Finlayson et al., for “intersex genital mutilation” may facilitate ac- “Response to ‘Re. Attitudes towards disorders of sex devel- opment nomenclature among affected individuals”, Journal cess to reparative treatments. of Pediatric Urology (May 2017): p. 1.e7. Available at https:// doi.org/10.1016/j.jpurol.2017.04.007. References 12. Johnson et al. (see note 11), p. 1.e1. 13. K. Lin-Su, O. Lekarev, D. Poppas et al., ‘Congenital 1. World Health Organization, Sexual health, human adrenal hyperplasia patient perception of “disorders of rights and the law (Geneva: World Health Organization, sex development” nomenclature’, International Journal of 2015), p. 1. Pediatric Endocrinology 2015, no. 1 (December 2015): p. 6. 2. Ibid., pp. 1–2. Available at https://doi.org/10.1186/s13633-015-0004-4. 3. Ibid., p. 4. 14. InterACT, “InterACT statement on intersex termi- 4. S. Cochran, J. Drescher, E. Kismödi et al., “Proposed nology”, May 2016. Available at http://interactadvocates. declassification of disease categories related to sexual ori- org/-statement-on-intersex-terminology/; E. Black, entation in the International Statistical Classification of K. Bond, T. Briffa et al., “Darlington statement: Joint con- Diseases and Related Health Problems (ICD-11),” Bulletin of sensus statement from the intersex community retreat in the World Health Organization 92, no. 9 (September 1, 2014), Darlington, March 2017”, (10 March 2017), para. 6. Available

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at https://eprints.qut.edu.au/104412/. 23. M. Cabral and M. Carpenter (see note 17). 15. T. Jones, “The needs of students with intersex varia- , “I want to be like nature tions”, 16, no. 6 (11 March 2016): p. 6. Available made me” (2017). Available at https://www.hrw.org/ at https://doi.org/10.1080/14681811.2016.1149808; Intersex report/2017/07/25/i-want-be-nature-made-me/medical- Human Rights Australia, “Demographics”, 28 July 2016. ly-unnecessary-surgeries-intersex-children-us. Available at https://ihra.org.au/demographics/. 24. L.-M. Liao, D. Wood, and S. M Creighton, “Parental 16. Office of the High Commissioner for Human Rights, choice on normalising cosmetic genital surgery”, BMJ 351 African Commission on Human and Peoples’ Rights, Coun- (28 September 2015): p. h5124; Victorian Department of cil of Europe Office of the Commissioner for Human Rights Health & Human Services, “Congenital adrenal hyperplasia et al., “ – Wednesday 26 October. (CAH) in neonates”, 16 October 2015. Available at https:// End violence and harmful medical practices on intersex www2.health.vic.gov.au:443/hospitals-and-health-services/ children and adults, UN and regional experts urge” (Office patient-care/perinatal-reproductive/neonatal-ehandbook/ of the High Commissioner for Human Rights, 24 October conditions/congenital-adrenal-hyperplasia; Re: Carla (Med- 2016). Available at http://www.ohchr.org/EN/NewsEvents/ ical procedure) (2016), 7 Family Court of Australia. Available Pages/DisplayNews.aspx?NewsID=20739&LangID=E. See at http://www.austlii.edu.au/cgi-bin/sinodisp/au/cases/cth/ also: Council of Europe Commissioner for Human Rights, FamCA/2016/7.html; J. Méndez, Special Rapporteur on “Human rights and intersex people, issue paper” (April torture and other cruel, inhuman or degrading treatment 2015), p. 9. 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