Intersex Intervention: A Health and Human Rights Perspective

Intersex Intervention:

A Health and Human Rights Perspective

Amy Frieder^[*]

Introduction

As worldwide awareness advances acceptance for people with diverse sexual orientations and gender identities, and as consent education grows in global movements against sexual assault, a group of people often left out of both the LGBTQ acronym and conversations about consent deserve concern: intersex people. Intersex people are born with sex characteristics that do not fit typical definitions of male and female.[1] Up to 1.7 percent of babies are born intersex, making them just as common as redheads.[2] However, in many countries, intersex children are often subjected to repeated surgery to attempt to change their sex characteristics so that they align with typical male or female characteristics, causing physical, psychological, and emotional pain—and violating their rights. This essay seeks to shed light on the plight of intersex people, illuminating how health and international human rights perspectives can work in tandem to advance intersex rights. In doing so, this essay advocates for bans on non-consensual, medically unnecessary surgeries on intersex children.

 

The Problem of Non-consensual Intersex Surgeries and Sterilization

Intersex persons are often subjected to sex assignment and genital surgeries practiced without informed consent, aimed at attempting to “normalize” the appearance of the person’s genitals. The UN Committee against Torture and the Special Rapporteur on torture and other cruel, inhuman, or degrading treatment or punishment have expressed concern over the lack of informed consent for these surgeries on intersex people,[3] and the UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health has recommended that healthcare providers strive to postpone non-emergency invasive and irreversible interventions until the intersex patient is old enough to provide informed consent.[4]

The Inter-American Commission on Human Rights has been informed that these surgeries on intersex people without their informed consent are standard throughout the Americas, including Argentina, Brazil, Canada, Colombia, Costa Rica, Chile, El Salvador, Mexico, the United States, and Uruguay, among others.[5] Intersex body presentations pose no health risks, so these “genital-normalizing” surgeries have no medical benefits and instead are completed for cosmetic purposes in order to ensure bodies reflect the dominant standard of what constitutes a “male” or “female” body.[6] The “medical urgency” behind these surgeries during infancy stems from the alleged impossibility of parents, the medical community, and society in general to accept sexual “uncertainty” because the infant cannot easily and promptly be classified as a girl or boy.[7]

These interventions are carried out because variations in sex characteristics are generally considered obstacles to leading a “normal” life, not because they themselves pose a risk to the lives of intersex persons.[8] Indeed, organizations have reported that these surgeries are part of an attempt to prevent suffering later in life that is caused by “lack of conformity with binary sexual standards.”[9] Given these implications, some intersex organizations and human rights defenders characterize these surgeries as culturally accepted forms of infant genital mutilation.[10] Complications such as pain, scarring, and loss of sensation are common.[11]

Intersex persons are also subjected to sterilization. Several international UN human rights bodies and agencies have noted that reproductive organ surgeries and procedures commonly conducted on intersex persons, often without their consent, may result in the termination of all or some of their reproductive capacity.[12] This likely contributes to psychological harm: a study of intersex people in Germany, France, the Netherlands, Poland, Sweden, and the United Kingdom found that psychiatric disorders were reported in 45.2 percent of respondents and suicide attempt in 6.8 percent.[13]

However, studies such as these are limited and often do not center intersex people themselves, so research on intersex surgeries and intersex people must be improved. A literature review of 61 health studies focusing on intersex populations around the world found that over a third of the sources focused on only one participant, and nearly as many had no participants and instead used the general existence of the group, other participants, or secondary sources to make key arguments about intersex variations.[14] Additionally, it found that studies on analyses of diagnosis or interventions strongly privileged the doctors’ or academics’ assessment of analytical or intervention “success,” and the pieces gave a strong overall message that in the authors’ own views, the interventions they had applied were successful overall; the sources largely did not report on the participants’ own assessment of the need for or success of the treatments.[15] Other problematic practices in these studies include the lack of adequate information dissemination and consent-gleaning in areas ranging from anatomical photography through to application of “corrective” genital surgeries.[16] Researchers should take a more active share in the responsibility of avoiding the exploitation of people with intersex variations through the health-related studies they publish and could standardize requirements of evidence of informed consent for any external genitalia photography published or other practices.[17]

 

International Human Rights Law Justifies Banning Nonconsensual Intersex Surgery

Values within the health and human rights fields suggest that governments must address the issues above. Article 25 of the Universal Declaration of Human Rights (1948) combined the two fields, codifying the right to an adequate standard of health and well-being as a human right. The Constitution of the World Health Organization first articulated the right to “the enjoyment of the highest attainable standard of physical and mental health”, which was incorporated into a legally binding obligation on states in the International Covenant on Economic, Social and Cultural Rights (ICESCR) Article 12[18] and has since been recognized in at least 115 national constitutions,[19] the African Charter on Human and Peoples’ Rights (1981), the Additional Protocol to the American Convention on Human Rights in the Area of Economic, Social and Cultural Rights, the European Social Charter (1961, revised in 1996), the American Convention on Human Rights (1969), and the European Convention for the Promotion of Human Rights and Fundamental Freedoms (1950).[20] Despite all of these guarantees, States have not ensured the highest attainable standard of physical and mental health for intersex persons. In a study of intersex adults in the United States, respondents reported much worse physical and mental health than found in the general population, exacerbated for intersex people who also face discrimination due to racism and ableism.[21] Similarly, a study of intersex people in Germany, France, the Netherlands, Poland, Sweden, and the United Kingdom found that psychiatric disorders were reported in 45.2 percent of respondents and suicide attempts in 6.8 percent.[22]

The right to health relies on states taking all reasonable steps possible to protect, promote, and fulfill their obligations pertaining to the right to health under international and national law, underpinned by the principle of equity. As the World Health Organization describes equity and health equity:

“Equity is the absence of unfair, avoidable or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically or by other dimensions of inequality (e.g. sex, gender, ethnicity, disability, or sexual orientation). Health is a fundamental human right. Health equity is achieved when everyone can attain their full potential for health and well-being.”[23]

Other health organizations define health equity as achieved “when every person has the opportunity to ‘attain his or her full health potential’ and no one is ‘disadvantaged from achieving this potential because of social position or other socially determined circumstances,’”[24] or “when health resources are allocated and health care services are received according to need.”[25] Since sex is a dimension of inequality in both the health sphere and the international human rights sphere, a well-rounded approach for any government interested in addressing healthcare inequities should include vulnerable and at-risk populations, including intersex persons.

Beyond the legal right to health and the health field’s conception of health equity is the concept of children’s rights, and their eventual right to family planning—both of which are impeded when children undergo surgery without their consent and permanently lose their reproductive capacity. The right to health is included in the Convention on the Rights of the Child (CRC) Article 24, and while it is true that infants are unable to give informed consent and health practitioners defer to parents to give consent,[26] “many doctors continue to misinform parents of intersex children and pressure them into choosing unnecessary cosmetic surgeries on their children,” according to a Human Rights Watch report.[27] The International Conference on Population and Development (ICPD) Programme of Action, adopted in 1994 by 179 United Nations Member States, asserted the right to plan one’s family and emphasized gender equality and individual dignity with respect to reproductive rights.[28] Intersex people who undergo sterilization surgeries and other medical procedures that remove their reproductive capacity without their consent have effectively lost their right to family planning.

 

Conclusion: Measures to Address Nonconsensual Intersex Surgeries

International human rights leaders and governments have called on reducing or eliminating non-consensual intersex surgeries. The UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health has recommended that healthcare providers strive to postpone non-emergency invasive and irreversible interventions until the intersex patient is old enough to provide informed consent for such surgeries.[29] Malta, Portugal, and Germany have banned non-consensual, medically unnecessary surgeries on intersex children,[30] as well as India’s Tamil Nadu state government,[31] after an Indian court ruled that “[t]he consent of the parent cannot be considered as the consent of the child.”[32] The European Parliament issued a resolution “strongly condemn[ing] sex-normalising treatments and surgery” and encouraging member states to adopt legislation that protects the bodily integrity of intersex people “as soon as possible.”[33] In the United States, only California has passed a resolution supporting the bodily autonomy of intersex youth, but this is a nonbinding resolution, and California has repeatedly failed to pass legislation that would postpone elective surgeries on intersex children until they can participate in the decision.[34] The fields of healthcare and international human rights law implore: end this medically unnecessary, irreversible, non-consensual practice on young children, and allow them to grow, have bodily autonomy, and make their own decisions about who they want to be.

[*] J.D., Harvard Law School, 2022; B.S., Cornell University, 2015. I would like to thank Victor Madrigal-Borloz, United Nations Independent Expert on sexual orientation and gender identity; Alex Chen, Founding Director of the LGBTQ+ Advocacy Clinic at Harvard Law School; and the editors of the Harvard Human Rights Journal, particularly Susan Whaley.

[1] Intersex Awareness, U.N. Free & Equal, https://www.unfe.org/intersex-awareness (last visited Apr. 18, 2022).

[2] Intersex Awareness Day—here are 5 myths we need to shatter, Amnesty International (October 26, 2018), https://www.amnesty.org/en/latest/news/2018/10/its-intersex-awareness-day-here-are-5-myths-we-need-to-shatter.

[3] Comm. Against Torture, Rep. on Its Forty-Seventh Session, para. 20, U.N. Doc. CAT/C/DEU/CO/5 (Dec. 12, 2011); Juan E. Méndez (Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment), Rep. on Abuses in Healthcare Settings, para. 77, U.N. Doc. A/HRC/22/53 (Feb. 1, 2013); High Comm’r for Hum. Rts., Discriminatory laws and practices and acts of violence against individuals based on their sexual orientation and gender identity, para. 57, U.N. Doc. A/HRC/19/41 (Nov. 17, 2011).

[4] Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Rep. on Informed Consent, para. 49, U.N. Doc. A/64/272 (Aug. 10, 2009).

[5] Inter-Am. Comm’n H.R., Violence Against Lesbian, Gay, Bisexual, Trans, and Intersex Persons in the Americas, OAS/Ser.L/V/II.rev.1, doc. 36, para. 184 (2015).

[6] Id at para.185.

[7] Id.

[8] Id.

[9] Id.

[10] See IACHR, Public Hearing on Situation of Human Rights of Intersex Persons in the Americas, 147th Period of Sessions (2013).

[11] Sarah Creighton, Surgery for intersex, 94 J Royal Soc’y Med 218, 219 (2001).

[12] Off. of the High Comm’r for Refugees, U.N. Women, U.N. AIDS, UNDP, U.N. Population Fund, UNICEF and WTO, Eliminating forced, coercive and otherwise involuntary sterilization: An interagency statement 7 (2014).

[13] Henrik Falhammar, Hedi Claahsen-van der Grinten, Nicole Reisch, Jolanta Slowikowska-Hilczer, Anna Nordenström, Robert Roehle, Claire Bouvattier, Baudewijntje P.C. Kreukels, Birgit Köhler, and on behalf of the dsd-LIFE group, Health status in 1040 adults with disorders of sex development (DSD): A European multicenter study, 7 Endocrine Connections 466, 470 (2018).

[14] Tiffany Jones, Intersex Studies: A Systematic Review of International Health Literature, SAGE Open 1, 5–6 (2018).

[15] Id.

[16] Id at 6-7.

[17] Id at 10.

[18] Right to Health: An Inclusive Right for All, World Medical Association, https://www.wma.net/what-we-do/human-rights/right-to-health (last visited Apr. 18, 2022).

[19] Off. of the High Comm’r for Hum. Rts. and WHO, The Right to Health 10, https://www.ohchr.org/Documents/Publications/Factsheet31.pdf.

[20] Id.

[21] Amy Rosenwohl-Mack, Suegee Tamar-Mattis, Arlene B. Baratz, Katherine B. Dalke, Alesdair Ittelson, Kimberly Zieselman, Jason D. Flatt, A national study on the physical and mental health of intersex adults in the U.S., 15(10) PLoS ONE 9 (2020) .

[22] See Falhammar et al., supra note 13 at 470.

[23] Health Equity, World Health Organization, https://www.who.int/health-topics/health-equity#tab=tab_1.

[24] Health Equity, Ctrs. for Disease Control and Prevention, https://www.cdc.gov/chronicdisease/healthequity/index.htm.

[25] Waris Qidwai, Tabinda Ashfaq, Tawfik A. M. Khoja, Ketki Merchant, Equity in Healthcare: Status, Barriers, and Challenges, 9 Middle East J Fam Med 33, 34 (2011).

[26] Aviva L. Katz, Robert C. Macauley, Mark R. Mercurio, Margaret R. Moon, Alexander L. Okun, Douglas J. Opel, Mindy B. Statter, Informed Consent in Decision-Making in Pediatric Practice, 138 Amer. Academy of Pediatrics e5 (2016).

[27] “I Want to Be Like Nature Made Me”: Medically Unnecessary Surgeries on Intersex Children in the US, Hum. Rts. Watch (July 27, 2017), https://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us.

[28] International Conference on Population and Development Programme of Action, Twentieth Anniversary Edition, United Nations Population Fund 64 (2014), https://www.unfpa.org/publications/international-conference-population-and-development-programme-action.

[29] U.N. Secretary General, Right of everyone to the enjoyment of the highest attainable

standard of physical and mental health, para.49, U.N. Doc. A/64/272 (Aug. 10 2009).

[30] Jesse Jones, Loopholes feared in new German laws against forced intersex surgery, Pink Advocate (Apr. 6, 2021), https://pinkadvocate.com/2021/04/06/loopholes-feared-in-new-german-laws-against-forced-intersex-surgery.

[31] Kyle Knight, Indian State Bans Unnecessary Surgery on Intersex Children: New Government Committee Should Include Intersex Perspectives, Hum. Rts. Watch (Aug. 29, 2019), https://www.hrw.org/news/2019/08/29/indian-state-bans-unnecessary-surgery-intersex-children.

[32] Id.

[33] Resolution on the Rights of Intersex People, Eur. Parl. Doc. B8-0101, para. 2, (Aug. 2, 2019).

[34] The only other states with comparable legislation even introduced are Rhode Island and Nevada. Intersex Legislation and Regulation, InterACT, https://interactadvocates.org/intersex-legislation-regulation; Legal Cases/Legislation, Intersex Campaign for Equality, https://www.intersexequality.com/category/legal-cases-legislation; Susan Miller, California becomes first state to condemn intersex surgeries on children, USAToday (Aug. 28, 2018), https://www.usatoday.com/story/news/nation/2018/08/28/intersex-surgeries-children-california-first-state-condemn/1126185002; Alex Cooper, Bill Banning Unnecessary Surgeries on Intersex Children Fails, Advocate (Jan. 7, 2022), https://www.advocate.com/news/2022/1/07/california-bill-banning-unnecessary-surgeries-intersex-children-fails/.