Intersex human rights
|Human rights and legal issues|
|Medicine and biology|
|Society and history|
Intersex people are born with sex characteristics, such as chromosomes, gonads, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit typical binary notions of male or female bodies".
Intersex infants and children, such as those with ambiguous outer genitalia, may be surgically and/or hormonally altered to fit perceived more socially acceptable sex characteristics. However, this is considered controversial, with no firm evidence of good outcomes. Such treatments may involve sterilization. Adults, including elite female athletes, have also been subjects of such treatment. Increasingly these issues are recognized as human rights abuses, with statements from UN agencies, the Australian parliament, and German and Swiss ethics institutions. Intersex organizations have also issued joint statements over several years, including as part of an International Intersex Forum.
Implementation of human rights protections in legislation and regulation has been slower. In 2011, Christiane Völling won the first successful case brought against a surgeon for non-consensual surgical intervention. In 2015, the Council of Europe recognized, for the first time, a right for intersex persons to not undergo sex assignment treatment. In April 2015, Malta became the first country to outlaw non-consensual medical interventions to modify sex anatomy, including that of intersex people.
Other human rights and legal issues include the right to life, protection from discrimination, access to justice and reparations, access to information, and legal recognition. Few countries so far protect intersex people from discrimination, or provide access to reparations for harmful practices.
Intersex and human rights
Research indicates a growing consensus that diverse intersex bodies are normal—if relatively rare—forms of human biology, and human rights institutions are placing increasing scrutiny on medical practices and issues of discrimination against intersex people. A 2013 first international pilot study. Human Rights between the Sexes, by Dr. Dan Christian Ghattas, found that intersex people are discriminated against worldwide:
Intersex individuals are considered individuals with a «disorder» in all areas in which Western medicine prevails. They are more or less obviously treated as sick or «abnormal», depending on the respective society.
The Council of Europe highlights several areas of concern:
- unnecessary "normalising" treatment of intersex persons, and unnecessary pathologisation of variations in sex characteristics.
- unnecessary medicalisation is said to also impact a right to life.
- inclusion in equal treatment and hate crime law; facilitating access to justice and reparations.
- access to information, medical records, peer and other counselling and support.
- respecting self-determination in gender recognition, through expeditious access to official documents.
However, the implementation, codification and enforcement of intersex human rights remains slow. These actions take place through legislation, regulation and court cases, detailed below.
Multiple organizations have highlighted appeals to LGBT rights recognition that fail to address the issue of unnecessary "normalising" treatments on intersex children, using the portmanteau term "pinkwashing". In June 2016, Organisation Intersex International Australia pointed to contradictory statements by Australian governments, suggesting that the dignity and rights of LGBTI (LGBT and intersex) people are recognized while, at the same time, harmful practices on intersex children continue.
In August 2016, Zwischengeschlecht described actions to promote equality or civil status legislation without action on banning "intersex genital mutilations" as a form of pinkwashing. The organization has previously highlighted evasive government statements to UN Treaty Bodies that conflate intersex, transgender and LGBT issues, instead of addressing harmful practices on infants.
Protection from non-consensual medical interventions
Non-consensual medical interventions to modify the sex characteristics of intersex people take place in all countries where the human rights of intersex people have been explored. Such interventions have been criticized by the World Health Organization, other UN bodies such as the Office of the High Commissioner for Human Rights, and an increasing number of regional and national institutions.
Several rights have been stated as affected by involuntary or coerced medical treatment, particularly that on minors:
- the right to life.
- the right to privacy, including a right to personal autonomy or self-determination regarding medical treatment.
- prohibitions against torture and other cruel, inhuman and degrading treatment.
- a right to physical integrity and/or bodily autonomy.
- additionally, the best interests of the child may not be served by surgeries aimed at familial and social integration.
These issues have been addressed by a rapidly increasing number of international institutions including, in 2015, the Council of Europe, the United Nations Office of the United Nations High Commissioner for Human Rights and the World Health Organization. In April 2015, Malta became the first country to outlaw such interventions. In the same year, the Council of Europe became the first institution to state that intersex people have the right not to undergo sex affirmation interventions.
Constitutional Court of Colombia
Although not many cases of children with intersex conditions are available, a case taken to the Constitutional Court of Colombia led to changes in their treatment. The case significantly reduced the power of doctors and parents to decide surgical procedures on the children's ambiguous genitalia. Due to the decision of the Constitutional Court of Colombia on Case 1 Part 1 (SU-337 of 1999), doctors are obligated to inform parents on all the aspects of the intersex child. Parents can only consent to surgery if they have received accurate information, and cannot give consent after the child reaches the age of five. By then the child will have, supposedly, realized their gender identity. The court case has led to setting legal guidelines for doctors' surgical practice on intersex children.
In April 2015, Malta became the first country to outlaw non-consensual medical interventions in a Gender Identity Gender Expression and Sex Characteristics Act. The Act recognizes a right to bodily integrity and physical autonomy, explicitly prohibiting modifications to children's sex characteristics for social factors:
14. (1) It shall be unlawful for medical practitioners or other professionals to conduct any sex assignment treatment and/or surgical intervention on the sex characteristics of a minor which treatment and/or intervention can be deferred until the person to be treated can provide informed consent: Provided that such sex assignment treatment and/or surgical intervention on the sex characteristics of the minor shall be conducted if the minor gives informed consent through the person exercising parental authority or the tutor of the minor.
(2) In exceptional circumstances treatment may be effected once agreement is reached between the Interdisciplinary Team and the persons exercising parental authority or tutor of the minor who is still unable to provide consent: Provided that medical intervention which is driven by social factors without the consent of the minor, will be in violation of this Act.
In January 2016, the Ministry of Health of Chile ordered the suspension of unnecessary normalization treatments for intersex children, including irreversible surgery, until they reach an age when they can make decisions on their own.
Right to life
Preimplantation genetic diagnosis (PGD or PIGD) refers to genetic testing of embryos prior to implantation (as a form of embryo profiling), and sometimes even of oocytes prior to fertilization. PGD is considered in a similar fashion to prenatal diagnosis. When used to screen for a specific genetic condition, the method makes it highly likely that the baby will be free of the condition under consideration. PGD thus is an adjunct to assisted reproductive technology, and requires in vitro fertilization (IVF) to obtain oocytes or embryos for evaluation. The technology allows discrimination against those with intersex traits.
Georgiann Davis argues that such discrimination fails to recognize that many people with intersex traits led full and happy lives. Morgan Carpenter highlights the appearance of several intersex variations in a list by the UK Human Fertilisation and Embryology Authority of "serious" "genetic conditions" that may be de-selected, including 5 alpha reductase deficiency and androgen insensitivity syndrome, traits evident in elite women athletes and "the world's first openly intersex mayor". Organisation Intersex International Australia has called for the Australian National Health and Medical Research Council to prohibit such interventions, noting a "close entanglement of intersex status, gender identity and sexual orientation in social understandings of sex and gender norms, and in medical and medical sociology literature".
In 2015, the Council of Europe published an Issue Paper on Human rights and intersex people, remarking:
Intersex people’s right to life can be violated in discriminatory “sex selection” and “preimplantation genetic diagnosis, other forms of testing, and selection for particular characteristics”. Such de-selection or selective abortions are incompatible with ethics and human rights standards due to the discrimination perpetrated against intersex people on the basis of their sex characteristics.
Protection from discrimination
A handful of jurisdictions so far provide explicit protection from discrimination for intersex people. South Africa was the first country to explicitly add intersex to legislation, as part of the attribute of 'sex'. Australia was the first country to add an independent attribute, of 'intersex status'. Malta was the first to adopt a broader framework of 'sex characteristics', through legislation that also ended modifications to the sex characteristics of minors undertaken for social and cultural reasons. Bosnia-Herzegovina listed as "sex characteristics" Greece prohibits discrimination and hate crimes based on "sex characteristics", since 24 December 2015.
An Australian survey of 272 persons born with atypical sex characteristics, published in 2016, found that 18% of respondents (compared to an Australian average of 2%) failed to complete secondary school, with early school leaving coincident with pubertal medical interventions, bullying and other factors.
A 2015 Australian survey of people born with atypical sex characteristics found high levels of poverty, in addition to very high levels of early school leaving, and higher than average rates of disability. An Employers guide to intersex inclusion published by Pride in Diversity and Organisation Intersex International Australia also discloses cases of discrimination in employment.
Discrimination protection intersects with involuntary and coercive medical treatment. Maltese protections on grounds of sex characteristics provides explicit protection against unnecessary and harmful modifications to the sex characteristics of children.
In May 2016, the United States Department of Health and Human Services issued a statement explaining Section 1557 of the Affordable Care Act stating that the Act prohibits "discrimination on the basis of intersex traits or atypical sex characteristics" in publicly-funded healthcare, as part of a prohibition of discrimination "on the basis of sex".
In 2013, it was disclosed in a medical journal that four unnamed elite female athletes from developing countries were subjected to gonadectomies (sterilization) and partial clitoridectomies (female genital mutilation) after testosterone testing revealed that they had an intersex condition. Testosterone testing was introduced in the wake of the Caster Semenya case, of a South African runner subjected to testing due to her appearance and vigor. There is no evidence that innate hyperandrogenism in elite women athletes confers an advantage in sport. While Australia protects intersex persons from discrimination, the Act contains an exemption in sport.
Access to justice and reparations
Access to reparation appears limited, with a scarcity of legal cases.
Christiane Völling case, Germany
In Germany in 2011, Christiane Völling won what may be the first successful case against her medical treatment. The surgeon was ordered to pay €100,000 in damages after a legal battle that began in 2007, thirty years after the removal of her reproductive organs.
M.C. case, USA
Michaela Raab case, Germany
In 2015, Michaela Raab sued doctors in Nuremberg, Germany who failed to properly advise her. Doctors stated that they "were only acting according to the norms of the time - which sought to protect patients against the psychosocial effects of learning the full truth about their chromosomes." On 17 December 2015, the Nuremberg State Court ruled that the University of Erlangen-Nuremberg Clinic must pay damages and compensation.
Access to information
With the rise of modern medical science in Western societies, many intersex people with ambiguous external genitalia have had their genitalia surgically modified to resemble either female or male genitals. Surgeons pinpointed the birth of intersex babies as a "social emergency". A secrecy-based model was also adopted, in the belief that this was necessary to ensure “normal” physical and psychosocial development. Disclosure also included telling people that they would never meet anyone else with the same condition. Access to medical records has also historically been challenging. Yet the ability to provide free, informed consent depends on the availability of information.
Some intersex organizations claim that secrecy-based models have been perpetuated by a shift in clinical language to Disorders of sex development. Morgan Carpenter of Organisation Intersex International Australia quotes the work of Miranda Fricker on "hermeneutical injustice" where, despite new legal protections from discrimination on grounds of intersex status, "someone with lived experience is unable to even make sense of their own social experiences" due to the deployment of clinical language and "no words to name the experience".
Gender identities and legal recognition
Like all individuals, some intersex individuals may be raised as a particular sex (male or female) but then identify with another later in life, while most do not. Like non-intersex people, some intersex individuals may not identify themselves as either exclusively female or exclusively male. A 2012 clinical review suggests that between 8.5-20% of persons with intersex conditions may experience gender dysphoria, while sociological research in Australia, a country with a third 'X' sex classification, shows that 19% of people born with atypical sex characteristics selected an "X" or "other" option, while 52% are women, 23% men and 6% unsure.
Depending on the jurisdiction, access to any birth certificate may be an issue, including a birth certificate with a sex marker. The Asia Pacific Forum of National Human Rights Institutions states that:
Recognition before the law means having legal personhood and the legal protections that flow from that. For intersex people, this is neither primarily nor solely about amending birth registrations or other official documents. Firstly, it is about intersex people who have been issued a male or a female birth certificate being able to enjoy the same legal rights as other men and women
Access to a birth certificate with a correct sex marker may be an issue for people who do not identify with their sex assigned at birth, or it may only be available accompanied by surgical requirements.
The passports and identification documents of Australia and some other nationalities have adopted "X" as a valid third category besides "M" (male) and "F" (female), at least since 2003. In 2013, Germany became the first European nation to allow babies with characteristics of both sexes to be registered as indeterminate gender on birth certificates, amidst opposition and skepticism from intersex organisations who point out that the law appears to mandate exclusion from male or female categories. The Council of Europe acknowledged this approach, and concerns about recognition of third and blank classifications in a 2015 Issue Paper, stating that these may lead to "forced outings" and "lead to an increase in pressure on parents of intersex children to decide in favour of one sex." The Issue Paper argues that "further reflection on non-binary legal identification is necessary":
Mauro Cabral, Global Action for Trans Equality (GATE) Co-Director, indicated that any recognition outside the “F”/”M” dichotomy needs to be adequately planned and executed with a human rights point of view, noting that: “People tend to identify a third sex with freedom from the gender binary, but that is not necessarily the case. If only trans and/or intersex people can access that third category, or if they are compulsively assigned a third sex, then the gender binary gets stronger, not weaker”
Human rights investigations and statements
San Francisco Human Rights Investigation, 2005
The 2005 Human Rights Investigation into the Medical "Normalization" of Intersex People, by the Human Rights Commission of the City and County of San Francisco is thought "likely to be the first human rights report into the treatment of intersex people, certainly in the English language." The report found that:
- Infant genital surgeries and sex hormone treatments that are not performed for the treatment of physical illness, such as improving urinary tract or metabolic functioning, and have not been shown to alleviate pain or illness (hereafter referred to as "normalizing" interventions) are unnecessary and are not medical or social emergencies.
- "Normalizing" interventions done without the patient's informed consent are inherent human rights abuses.
- "Normalizing" interventions deprive intersex people of the opportunity to express their own identity and to experience their own intact physiology.
- It is unethical to disregard a child's intrinsic human rights to privacy, dignity, autonomy, and physical integrity by altering genitals through irreversible surgeries for purely psychosocial and aesthetic rationales. It is wrong to deprive a person of the right to determine their sexual experience and identity. ...
- It is ethically wrong to treat people differently or unfairly because they are perceived by others to be "monsters" or "oddities."
Yogyakarta Principles, 2006
The 2006 Yogyakarta Principles on the Application of International Human Rights Law in relation to Sexual Orientation and Gender Identity is a set of principles relating to sexual orientation and gender identity, intended to apply international human rights law standards to address the abuse of the human rights of lesbian, gay, bisexual and transgender (LGBT) people. It briefly mentions intersex, influenced by the Declaration of Montreal which first demanded prohibition of unnecessary post-birth surgery to reinforce gender assignment until a child is old enough to understand and give informed consent. The Yogyakarta Principles detail this in the context of existing UN declarations and conventions under Principle 18, which called on states to:
B. Take all necessary legislative, administrative and other measures to ensure that no child's body is irreversibly altered by medical procedures in an attempt to impose a gender identity without the full, free and informed consent of the child in accordance with the age and maturity of the child and guided by the principle that in all actions concerning children, the best interests of the child shall be a primary consideration;
C. Establish child protection mechanisms whereby no child is at risk of, or subjected to, medical abuse;— The Yogyakarta Principles
Report of Swiss National Advisory Council on Biomedical Ethics, 2012
Especially delicate are those cases where a psychosocial indication is used to justify the medical urgency of surgical sex assignment in children who lack capacity. Here, there is a particularly great risk of insufficient respect being accorded to the child's (future) self-determination and its physical integrity...
Decisions on sex assignment interventions are to be guided by the questions of what genitalia a child actually requires at a given age (apart from a functional urinary system) and how these interventions will affect the physical and mental health of the child and the future adult. Treatment needs to be carefully justified, especially since – in functional, aesthetic and psychological respects – surgically altered genitalia ... are not comparable to natural male or female genitalia. Decisions are to be guided, above all, by the child's welfare...
The harmful consequences may include, for example, loss of fertility and sexual sensitivity, chronic pain, or pain associated with dilation (bougienage) of a surgically created vagina, with traumatizing effects for the child. If such interventions are performed solely with a view to integration of the child into its family and social environment, then they run counter to the child's welfare. In addition, there is no guarantee that the intended purpose (integration) will be achieved.
The report is notable for making a clear apology for damage done to intersex people in the past, and up until the present. It recommends deferring all "non-trivial" surgeries which have "irreversible consequences". The report also recommended criminal sanction for non-medically necessary genital surgeries.
Report of UN Special Rapporteur on Torture, 2013
On 1 February 2013, Juan E. Méndez, the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, issued a statement condemning non-consensual surgical intervention on intersex people. His report states:
76. … There is an abundance of accounts and testimonies of persons being denied medical treatment, subjected to verbal abuse and public humiliation, psychiatric evaluation, a variety of forced procedures such as sterilization, State-sponsored forcible … hormone therapy and genital-normalizing surgeries under the guise of so called "reparative therapies". These procedures are rarely medically necessary, can cause scarring, loss of sexual sensation, pain, incontinence and lifelong depression and have also been criticized as being unscientific, potentially harmful and contributing to stigma (A/HRC/14/20, para. 23).
77. Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, "in an attempt to fix their sex", leaving them with permanent, irreversible infertility and causing severe mental suffering…
79. The mandate has noted that "members of sexual minorities are disproportionately subjected to torture and other forms of ill-treatment because they fail to conform to socially constructed gender expectations.
Resolution by the Council of Europe, 2013
In October 2013, the Council of Europe adopted a resolution 1952, 'Children's right to physical integrity'. It calls on member states to
undertake further research to increase knowledge about the specific situation of intersex people, ensure that no-one is subjected to unnecessary medical or surgical treatment that is cosmetic rather than vital for health during infancy or childhood, guarantee bodily integrity, autonomy and self-determination to persons concerned, and provide families with intersex children with adequate counselling and support
Senate Committee inquiry, Australia, 2013
In October 2013, the Australian Senate published a report entitled Involuntary or coerced sterilisation of intersex people in Australia. The Senate found that "normalising" surgeries are taking place in Australia, often on infants and young children, with preconceptions that it described as "disturbing": "Normalising appearance goes hand in hand with the stigmatisation of difference".
They commented: "...normalisation surgery is more than physical reconstruction. The surgery is intended to deconstruct an intersex physiology and, in turn, construct an identity that conforms with stereotypical male and female gender categories" and: "Enormous effort has gone into assigning and 'normalising' sex: none has gone into asking whether this is necessary or beneficial. Given the extremely complex and risky medical treatments that are sometimes involved, this appears extremely unfortunate."
Organisation Intersex International Australia welcomed the report, saying that,
At a first view, many of the headline conclusions and recommendations are positive – accepting our recommendations on minimising genital surgery, concern over the lack of adequate data, insufficient psychosocial support, and concern that decision making on cancer risk is insufficiently disentangled from wider concerns about a person's intersex status itself; we also broadly welcome the recommendations relating to the prenatal use of Dexamethasone ... The distinction between therapeutic and non-therapeutic treatment has failed many intersex people in Australia. We welcome the recommendation for the proper oversight of individual cases.
World Health Organization and UN interagency report, 2014
In May 2014, the World Health Organization issued a joint statement on Eliminating forced, coercive and otherwise involuntary sterilization, An interagency statement with the OHCHR, UN Women, UNAIDS, UNDP, UNFPA and UNICEF. The report references the involuntary surgical "sex-normalising or other procedures" on "intersex persons". It questions the medical necessity of such treatments, patients' ability to consent, and a weak evidence base. The report recommends a range of guiding principles for medical treatment, including ensuring patient autonomy in decision-making, ensuring non-discrimination, accountability and access to remedies.
Council of Europe Issue Paper, 2015
In a wide-ranging first detailed analysis on intersex health and human rights issues by an international institution, the Council of Europe published an Issue Paper entitled Human rights and intersex people in May 2015. The document highlighted an historic lack of attention to intersex human rights, stating that current social and biomedical understandings of sex and gender make intersex people "especially vulnerable" to human rights breaches. The report cited previous reports from San Franscisco, the Swiss National Advisory Commission on Biomedical Ethics and the Australian Senate. The Commissioner for Human Rights made eight recommendations. For this first time, these recognized a right to not undergo sex assignment treatment.
UN Office of the High Commissioner for Human Rights report, 2015
In 2015, the UN Office of the High Commissioner for Human Rights (OHCHR) described human rights violations against intersex people:
53. Many intersex children, born with atypical sex characteristics, are subjected to medically unnecessary surgery and treatment in an attempt to force their physical appearance to align with binary sex stereotypes. Such procedures are typically irreversible and can cause severe, long-term physical and psychological suffering.
The OHCHR acknowledged Australia and Malta as "the first countries to expressly prohibit discrimination against intersex persons," and Malta as "the first State to prohibit sex-assignment surgery or treatment on intersex minors without their informed consent." It called on UN member states to protect intersex persons from discrimination, and address violence by:
- "Banning “conversion” therapy, involuntary treatment, forced sterilization and forced genital and anal examinations;"
- "Prohibiting medically unnecessary procedures on intersex children"
WHO report, "Sexual health, human rights and the law", 2015
In June 2015, the World Health Organization published a major report on sexual and reproductive rights and the law. Section 3.4.9, on intersex people, identifies discrimination and stigma within health systems (citations omitted):
Intersex people may face discrimination and stigma in the health system, in many cases being subjected to lack of quality of care, institutional violence and forced interventions throughout their lifetime.
A major concern for intersex people is that so-called sex normalizing procedures are often undertaken during their infancy and childhood, to alter their bodies, particularly the sexual organs, to make them conform to gendered physical norms, including through repeated surgeries, hormonal interventions and other measures. As a result, such children may be subjected to medically unnecessary, often irreversible, interventions that may have lifelong consequences for their physical and mental health, including irreversible termination of all or some of their reproductive and sexual capacity.
The report stated that intersex persons are entitled "to access health services on the same basis as others, free from coercion, discrimination and violence", with the ability offer free and informed consent. The report also called for the education and training of medical and psychological professionals on "physical, biological and sexual diversity and integrity".
Asia Pacific Forum of NHRIs manual, 2016
In 2016, the Asia Pacific Forum of National Human Rights Institutions (AFP) manual on Promoting and Protecting Human Rights in relation to Sexual Orientation, Gender Identity and Sex Characteristics. The document provides an analysis of human rights issues, including the rights to physical integrity, non-discrimination, effective remedies and redress, and recognition before the law. The report states:
Intersex people often experience human rights violations because their bodies are different. These include so-called ‘sex-normalising’ surgeries or hormone treatment on infants and children, that are medically unnecessary and typically performed when a child is too young to be involved in the decision-making process. These practices violate the right to physical integrity and have been described by human rights bodies as forms of torture or ill-treatment and as harmful practices. Fear and discrimination can never justify human rights abuses, including forced medical treatment. States have a duty to combat harmful stereotypes and discrimination against intersex people.
UN and regional experts statement, 2016
For Intersex Awareness Day, October 26, UN experts including the Committee against Torture, the Committee on the Rights of the Child and the Committee on the Rights of Persons with Disabilities, along with the Council of Europe Commissioner for Human Rights, the Inter-American Commission on Human Rights and United Nations Special Rapporteurs called for an urgent end to human rights violations against intersex persons, including in medical settings. The experts also called for the investigation of human rights abuses, access to reparations, and the implementation of anti-discrimination measures.
States must, as a matter of urgency, prohibit medically unnecessary surgery and procedures on intersex children. They must uphold the autonomy of intersex adults and children and their rights to health, to physical and mental integrity, to live free from violence and harmful practices and to be free from torture and ill-treatment. Intersex children and their parents should be provided with support and counselling, including from peers.
The United Nations Office of the High Commissioner for Human Rights also launched a website, United Nations for Intersex Awareness.
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