Intersex human rights: clinical self-regulation has failed

25 October, 2018

 

Written by Morgan Carpenter, GATE, New York, USA; Intersex Human Rights Australia; and Sydney Health Ethics, The University of Sydney, Australia.

 

The New York Times recently disclosed that the Trump administration may seek to redefine gender to refer to two unchangeable biologically-determined sex categories [1]. As can be seen in many of the responses to this proposal, not everyone has innate biological sex characteristics that neatly line up with XX or XY sex chromosomes [2]. What might be less well understood is that, for much of the last century, medicine has attempted to modify the bodies of people with non-conforming sex characteristics to make sure that they match up, as closely as possible, to medical and social norms for female or male categories. For more than 25 years, intersex people have been calling for an end to these often forced and coercive medical interventions. Such practices lack evidence to support them, even while evidence of harm grows, through the gathering of data and testimonies by intersex human rights defenders around the world. In recent years, UN Treaty Bodies and many other human rights instruments and institutions have responded to these testimonies [3], but forced interventions persist today.

 

Intersex people are born with sex characteristics that don’t fit medical or social norms for female or male bodies. Many intersex traits can also be determined prenatally. With some exceptions, intersex bodies are most often healthy. Infants, children and adolescents born with intersex bodies are often subjected to medical interventions to “normalise” sex characteristics, not on the basis of evidence, but on the basis of clinical feelings and beliefs and narrow social norms. These include ideological beliefs that girls and boys need to look a particular way, or that they need to look a particular way in order to grow up to be “normal”, “productive”, “functional”, heterosexual and cisgender [4–6].

 

The consequences of such interventions and associated examinations include a need for lifelong hormone replacement, repeat surgeries, lack of sexual function and sensation, incorrect gender assignment and trauma [7].

 

There is neither clinical consensus nor clinical evidence to support current coercive practices [8]. Clinical bodies face multiple challenges in constructing evidence to support these clinical practices. A deliberate historic practice of concealing diagnostic information [9] means that it is likely most intersex people lack information about their bodies that can help them manage their health, let alone make them reachable to clinical researchers. Legacies of poor treatment, trauma and medical display mean that many individuals will not engage with health services that they may actually need [8]. Most damningly, research to ascertain the impact of forced practices reveals human rights violations. In some cases, as in attempts to gauge the post-surgical clitoral sensitivity of children, clinical research practices themselves violate human rights [10].

 

Multidisciplinary teams bring together clinicians to manage the treatment of children with intersex variations but, in practice, rather than allowing for the inclusion of diverse perspectives they may simply be an audience for surgeons [11], or they may silence or ostracise dissenting viewpoints [12]. They may focus on improvement of techniques, rather than addressing the more fundamental questions of necessity and personal consent. Clinicians educate parents, presenting surgery as a positive solution. Timmermans and co-authors describe how decision-making is steered “by strategically deploying uncertainties”; instead of being patient-centred, care is parent-centred. They comment that “the profession has been able to selectively appropriate challenges to its jurisdiction” [13].

 

Clinical research has been cherry-picked to confirm clinical biases, while the voices of yesterday’s patients are frequently dismissed as relating to “obsolete” practices [6,14]. Community-based participatory research is subject to some of the same constraints; it has been dismissed as “political” and unrepresentative, as if (erroneously) clinical studies are neither of these [15,16]. More community-based participatory research is essential, but community development itself has been slow, hampered by resource constraints, the injustices of silencing, and other legacies of medical interventions.

 

A selective appropriation of challenges to medical jurisdiction over intersex bodies can also be seen in boundary disputes about terminology, and whether or not a specific variation is intersex. These are deployed strategically to maintain clinical authority over “disordered” girls and boys. Today, medicine frames intersex people as either female or male, while the law and social sciences increasingly frame intersex people as neither female nor male [6]. As a consequence, clinical attention to legal developments, predominantly focused on identity recognition, has also been selective. The implications of a 1979 legal case that annulled the marriage of an intersex man on the ahistorical basis that he was a hermaphrodite were ignored, but this was before the existence of an intersex human rights movement [17]. A case reported subsequently, in 2003, prompted clinicians to differentiate between biological characteristics and identity labels, and reassert clinical authority over bodies with “disorders of sex development” [18]. That clinical distinction between biological characteristics and identities has also been selective: a clinical desire to construct normative identities persists [19]. Today, clinicians who work for the International Association of Athletics Federations say that third sex categories exist because intersex people exist, and women with intersex variations who refuse ‘treatment’ should compete in such categories, or as men, or not at all [20].

 

In the face of these complexities and challenges, and for more than 25 years, intersex human rights defenders have documented and presented evidence of harm from clinical practices and called for change. The 26th of October marks Intersex Awareness Day. The event commemorates the first public demonstration by intersex people and allies in 1996, prompted by their exclusion from a clinical event [21,22].

 

In response to challenges by human rights defenders, guidelines and statements calling for change in clinical practices have been published by clinical bodies and institutions around the world [23], such as Physicians for Human Rights [24], and the Australian Medical Association [25]. These are significant and necessary steps forward, but there is no evidence to suggest that they have impacted on clinical practices; indeed, there is evidence they are disregarded [26,27]. There is a lack of transparency and accountability; more leadership is needed, but this alone is insufficient. Self-regulation has failed.

 

Action to recognise our rights to bodily integrity remains slow. Malta was the first country to enact reforms to protect the rights of intersex people in the context of medical interventions. This Intersex Awareness Day, intersex human rights defenders around the world will be calling for action to follow this lead. Policy-makers should heed their calls.

 

 

[1] Green EL, Benner K, Pear R. Trump Administration Eyes Defining Transgender Out of Existence. The New York Times 2018. https://www.nytimes.com/2018/10/21/us/politics/transgender-trump-administration-sex-definition.html

[2] Weigel AR. Intersex, and Erased Again. The New York Times 2018. https://www.nytimes.com/2018/10/23/opinion/trump-transgender-memo-intersex.html

[3] Office of the High Commissioner for Human Rights, African Commission on Human and Peoples’ Rights, Council of Europe, Office of the Commissioner for Human Rights, Inter-American Commission on Human Rights, Special Rapporteur on torture and other cruel, inhuman, or degrading treatment or punishment, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, et al. Intersex Awareness Day – Wednesday 26 October. End violence and harmful medical practices on intersex children and adults, UN and regional experts urge 2016.

[4] Littlefield A. Intersex People Want to End Nonconsensual Surgeries. A California Resolution Is Their ‘Warning Shot.’ RewireNews 2018. https://rewire.news/article/2018/08/13/intersex-people-want-to-end-nonconsensual-surgeries-a-california-resolution-is-their-warning-shot/

[5] Carpenter M. The human rights of intersex people: addressing harmful practices and rhetoric of change. Reproductive Health Matters 2016;24:74–84. doi:10.1016/j.rhm.2016.06.003.

[6] Carpenter M. The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia. Bioethical Inquiry 2018:1–9. doi:10.1007/s11673-018-9855-8.

[7] Cabral Grinspan M, Carpenter M. Gendering the Lens: Critical Reflections on Gender, Hospitality and Torture. Gender Perspectives on Torture: Law and Practice, Center for Human Rights & Humanitarian Law, Washington College of Law, American University; 2018, p. 183–96.

[8] Lee PA, Nordenström A, Houk CP, Ahmed SF, Auchus R, Baratz A, et al. Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care. Hormone Research in Paediatrics 2016;85:158–180. doi:10.1159/000442975.

[9] Chase C. Surgical Progress Is Not the Answer to Intersexuality. Journal of Clinical Ethics 1998;9:385–92.

[10] Yang J, Felsen D, Poppas DP. Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability. The Journal of Urology 2007;178:1598–601. doi:10.1016/j.juro.2007.05.097.

[11] Lohman S, Lohman E, Davis G. Raising Rosie Our Story of Parenting an Intersex Child. London: Jessica Kingsley Publishers; 2018.

[12] Bonobo3D. Paediatric Surgeon Mika Venhola on INTERSEX. 2013. https://www.youtube.com/watch?v=riNtxjntqZE

[13] Timmermans S, Yang A, Gardner M, Keegan CE, Yashar BM, Fechner PY, et al. Does Patient-centered Care Change Genital Surgery Decisions? The Strategic Use of Clinical Uncertainty in Disorders of Sex Development Clinics. Journal of Health and Social Behavior 2018:002214651880246. doi:10.1177/0022146518802460.

[14] Baratz AB, Feder EK. Misrepresentation of Evidence Favoring Early Normalizing Surgery for Atypical Sex Anatomies. Archives of Sexual Behavior 2015;44:1761–3. doi:10.1007/s10508-015-0529-x.

[15] Meyer-Bahlburg H. Intersex: Fact or Fiction? Intersex and Identity. The Contested Self by Sharon E Preves. The Journal of Sex Research 2005;42:177–80.

[16] Carpenter M. The ‘normalisation’ of intersex bodies and ‘othering’ of intersex identities. In: Scherpe J, Dutta A, Helms T, editors. The Legal Status of Intersex Persons, Cambridge, England: Intersentia; 2018, p. 445–514.

[17] Finlay HA. Sexual identity and the law of nullity. Australian Law Journal 1980;54:115–26.

[18] Meyer-Bahlburg HFL, Migeon CJ, Berkovitz GD, Gearhart JP, Dolezal C, Wisniewski AB. Attitudes of Adult 46,XY Intersex Persons to Clinical Management Policies. The Journal of Urology 2004;171:1615–9. doi:10.1097/01.ju.0000117761.94734.b7.

[19] Hughes IA, Houk C, Ahmed SF, Lee PA, LWPES/ESPE Consensus Group. Consensus statement on management of intersex disorders. Archives of Disease in Childhood 2006;91:554–63. doi:10.1136/adc.2006.098319.

[20] Karkazis K, Carpenter M. Impossible “Choices”: The Inherent Harms of Regulating Women’s Testosterone in Sport. Journal of Bioethical Inquiry 2018. doi:10.1007/s11673-018-9876-3.

[21] Holmes M. When Max Beck and Morgan Holmes went to Boston. Intersex Day 2015.

[22] Beck M. Hermaphrodites with Attitude Take to the Streets. Intersex Society of North America n.d. http://www.isna.org/books/chrysalis/beck (accessed November 9, 2014).

[23] Knight K. Medical Experts Call to Defer Unnecessary Intersex Surgeries. Human Rights Watch 2018. https://www.hrw.org/news/2018/10/12/medical-experts-call-defer-unnecessary-intersex-surgeries (accessed October 12, 2018).

[24] Physicians for Human Rights. Unnecessary Surgery on Intersex Children Must Stop 2017.

[25] Australian Medical Association. AMA Position Statement Sexual and Reproductive Health 2014. 2014.

[26] Human Rights Watch. “I Want to Be Like Nature Made Me.” 2017.

[27] Carpenter M. Intersex Variations, Human Rights, and the International Classification of Diseases. Health and Human Rights 2018;20.

 

 

Please note that blog posts are not peer-reviewed and do not necessarily reflect the views of RHM as an organisation.

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