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Intersex

Abstract

Intersex people are born with any of several variations in sex characteristics including chromosomes, gonads, sex hormones, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit the typical definitions for male or female bodies". Such variations may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.

Intersex people were previously referred to as hermaphrodites, "congenital eunuchs", or congenitally "frigid". Such terms have fallen out of favor; in particular, the term "hermaphrodite" is considered to be misleading, stigmatizing, and scientifically specious. Medical description of intersex traits as disorders of sex development has been controversial since the label was introduced in 2006.

Intersex people may face stigmatization and discrimination from birth or discovery of an intersex trait. In some countries, documented in parts of Africa and Asia, this may include infanticide, abandonment and the stigmatization of families. Globally, some intersex infants and children, such as those with ambiguous outer genitalia, are surgically or hormonally altered to create 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 considered human rights abuses, with statements from international and national human rights and ethics institutions. Intersex organizations have also issued statements about human rights violations, including the Malta declaration of the third International Intersex Forum.

In 2011, Christiane Völling became the first intersex person known to have successfully sued for damages in a case brought for non-consensual surgical intervention. In April 2015, Malta became the first country to outlaw non-consensual medical interventions to modify sex anatomy, including that of intersex people.

Some intersex persons may be assigned and raised as a girl or boy but then identify with another gender later in life, while most continue to identify with their assigned sex.

Definitions

According to the UN Office of the High Commissioner for Human Rights:

In biological terms, sex may be determined by a number of factors present at birth, including:

- the number and type of sex chromosomes;

- the type of gonads—ovaries or testicles;

- the sex hormones;

- the internal reproductive anatomy (such as the uterus in females); and

- the external genitalia.

People whose characteristics are not either all typically male or all typically female at birth are intersex.

Some intersex traits are not always visible at birth; some babies may be born with ambiguous genitals, while others may have ambiguous internal organs (testes and ovaries). Others will not become aware that they are intersex unless they receive genetic testing, because it does not manifest in their phenotype.

History

Whether or not they were socially tolerated or accepted by any particular culture, the existence of intersex people was known to many ancient and pre-modern cultures. The Greek historian Diodorus Siculus wrote of "hermaphroditus" in the first century BCE that Hermaphroditus "is born with a physical body which is a combination of that of a man and that of a woman", and with supernatural properties.

In European societies, Roman law, post-classical canon law, and later common law, referred to a person's sex as male, female or hermaphrodite, with legal rights as male or female depending on the characteristics that appeared most dominant. The 12th-century "Decretum Gratiani" states that "Whether an hermaphrodite may witness a testament, depends on which sex prevails". The foundation of common law, the 17th Century "Institutes of the Lawes of England" described how a hermaphrodite could inherit "either as male or female, according to that kind of sexe which doth prevaile." Legal cases have been described in canon law and elsewhere over the centuries.

In some non-European societies, sex or gender systems with more than two categories may have allowed for other forms of inclusion of both intersex and transgender people. Such societies have been characterized as "primitive", while Morgan Holmes states that subsequent analysis has been simplistic or romanticized, failing to take account of the ways that subjects of all categories are treated.

During the Victorian era, medical authors introduced the terms "true hermaphrodite" for an individual who has both ovarian and testicular tissue, "male pseudo-hermaphrodite" for a person with testicular tissue, but either female or ambiguous sexual anatomy, and "female pseudo-hermaphrodite" for a person with ovarian tissue, but either male or ambiguous sexual anatomy. Some later shifts in terminology have reflected advances in genetics, while other shifts are suggested to be due to pejorative associations.

The term "intersexuality" was coined by Richard Goldschmidt in 1917. The first suggestion to replace the term 'hermaphrodite' with 'intersex' was made by Cawadias in the 1940s.

Since the rise of modern medical science, some intersex people with ambiguous external genitalia have had their genitalia surgically modified to resemble either female or male genitals. Surgeons pinpointed intersex babies as a "social emergency" when born. An 'optimal gender policy', initially developed by John Money, stated that early intervention helped avoid gender identity confusion, but this lacks evidence, and early interventions have adverse consequences for psychological and physical health. Since advances in surgery have made it possible for intersex conditions to be concealed, many people are not aware of how frequently intersex conditions arise in human beings or that they occur at all.

Dialog between what were once antagonistic groups of activists and clinicians has led to only slight changes in medical policies and how intersex patients and their families are treated in some locations. In 2011, Christiane Völling became the first intersex person known to have successfully sued for damages in a case brought for non-consensual surgical intervention. In April 2015, Malta became the first country to outlaw non-consensual medical interventions to modify sex anatomy, including that of intersex people. Many civil society organizations and human rights institutions now call for an end to unnecessary "normalizing" interventions, including in the Malta declaration.

Human rights and legal issues

Human rights institutions are placing increasing scrutiny on harmful practices and issues of discrimination against intersex people. 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. These developments have been accompanied by International Intersex Forums and increased cooperation amongst civil society organizations. However, the implementation, codification and enforcement of intersex human rights in national legal systems remains slow.

Areas of concern include: non-consensual medical interventions; stigma, discrimination and equal treatment; access to reparations and justice; access to information and support, and legal recognition.

Human rights and legal issues | Physical integrity and bodily autonomy

Stigmatization and discrimination from birth may include infanticide, abandonment and the stigmatization of families. Mothers in east Africa may be accused of witchcraft, and the birth of an intersex child may be described as a curse. Abandonments and infanticides have been reported in Uganda, Kenya, south Asia, and China.

Infants, children and adolescents also experience "normalising" interventions on intersex persons that are medically unnecessary and the unnecessary pathologisation of variations in sex characteristics. Medical interventions to modify the sex characteristics of intersex people, without the consent of the intersex person have taken place in all countries where the human rights of intersex people have been studied. These interventions have frequently been performed with the consent of the intersex person's parents, when the person is legally too young to consent. 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 due to their adverse consequences, including trauma, impact on sexual function and sensation, and violation of rights to physical and mental integrity. In April 2015, Malta became the first country to outlaw surgical intervention without consent. 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.

Human rights and legal issues | Anti-discrimination and equal treatment

Inclusion in equal treatment and hate crime law. Because people born with intersex bodies are seen as different, intersex infants, children, adolescents and adults "are often stigmatized and subjected to multiple human rights violations", including discrimination in education, healthcare, employment, sport, and public services. Several countries have so far explicitly protected intersex people from discrimination, with landmarks including South Africa, Australia, and, most comprehensively, Malta.

Human rights and legal issues | Reparations and justice

Facilitating access to justice and reparations. Access to reparation appears limited, with a scarcity of legal cases, such as the 2011 case of Christiane Völling in Germany. A second case was adjudicated in Chile in 2012, involving a child and his parents. A further successful case in Germany, taken by Michaela Raab, was reported in 2015. In the United States, the "M.C." legal case, advanced by Interact Advocates for Intersex Youth with the Southern Poverty Law Centre is still before the courts.

Human rights and legal issues | Information and support

Access to information, medical records, peer and other counselling and support. With the rise of modern medical science in Western societies, a secrecy-based model was also adopted, in the belief that this was necessary to ensure "normal" physical and psychosocial development.

Human rights and legal issues | Legal recognition

The Asia Pacific Forum of National Human Rights Institutions states that legal recognition is firstly "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." In some regions, obtaining any form of birth certification may be an issue. A Kenyan court case in 2014 established the right of an intersex boy, "Baby A", to a birth certificate.

Like all individuals, some intersex individuals may be raised as a certain sex (male or female) but then identify with another later in life, while most do not. Recognition of third sex or gender classifications occurs in several countries, however, it is controversial when it becomes assumed or coercive, as is the case with some German infants. 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.

Language

Research in the late 20th century led to a growing medical consensus that diverse intersex bodies are normal, but relatively rare, forms of human biology. Clinician and researcher Milton Diamond stresses the importance of care in the selection of language related to intersex people:

Language | The term 'intersex'

Some people with intersex traits self-identify as intersex, and some do not. Australian sociological research published in 2016, found that 60% of respondents used the term "intersex" to self-describe their sex characteristics, including people identifying themselves as intersex, describing themselves as having an intersex variation or, in smaller numbers, having an intersex condition. A majority of 75% of survey respondents also self-described as male or female. Respondents also commonly used diagnostic labels and referred to their sex chromosomes, with word choices depending on audience. Research by the Lurie Children's Hospital, Chicago, and the AIS-DSD Support Group published in 2017 found that 80% of affected Support Group respondents "strongly liked, liked or felt neutral about intersex" as a term, while caregivers were less supportive. The hospital reported that "disorders of sex development" may negatively affect care.

Some intersex organizations reference "intersex people" and "intersex variations or traits" while others use more medicalized language such as "people with intersex conditions", or people "with intersex conditions or DSDs (differences of sex development)" and "children born with variations of sex anatomy". In May 2016, Interact Advocates for Intersex Youth published a statement recognizing "increasing general understanding and acceptance of the term "intersex"".

Language | Hermaphrodite

A hermaphrodite is an organism that has both male and female reproductive organs. Until the mid-20th century, "hermaphrodite" was used synonymously with "intersex". The distinctions "male pseudohermaphrodite", "female pseudohermaphrodite" and especially "true hermaphrodite" are vestiges of outdated 19th-century thinking, reflecting histology (microscopic appearance) of the gonads. Medical terminology has shifted not only due to concerns about language, but also a shift to understandings based on genetics.

Currently, hermaphroditism is not to be confused with intersex, as the former refers only to a specific phenotypical presentation of sex organs and the latter to more complex combination of phenotypical and genotypical presentation. Using "hermaphrodite" to refer to intersex individuals is considered to be stigmatizing and misleading. "Hermaphrodite" is used for animal and vegetal species in which the possession of both ovaries and testes is either serial or concurrent, and for living organisms without such gonads but present binary form of reproduction, which is part of the typical life history of those species; "intersex" has come to be used when this is not the case.

Language | Disorders of sex development

"Disorders of sex development" (DSD) is a contested term, defined to include congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical. Members of the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology adopted this term in their "Consensus statement on management of intersex disorders". While it adopted the term, to open "many more doors", the now defunct Intersex Society of North America itself remarked that intersex is not a disorder. Other intersex people, activists, supporters, and academics have contested the adoption of the terminology and its implied status as a "disorder", seeing this as offensive to intersex individuals who do not feel that there is something wrong with them, regard the DSD consensus paper as reinforcing the normativity of early surgical interventions, and criticizing the treatment protocols associated with the new taxonomy.

Sociological research in Australia, published in 2016, found that 3% of respondents used the term "disorders of sex development" or "DSD" to define their sex characteristics, while 21% use the term when accessing medical services. In contrast, 60% used the term "intersex" in some form to self-describe their sex characteristics. U.S. research by the Lurie Children's Hospital, Chicago, and the AIS-DSD Support Group published in 2017 found that "disorders of sex development" terminology may negatively affect care, give offence, and result in lower attendance at medical clinics.

Alternatives to categorizing intersex conditions as "disorders" have been suggested, including "variations of sex development". Organisation Intersex International (OII) questions a disease/disability approach, argues for deferral of intervention unless medically necessary, when fully informed consent of the individual involved is possible, and self-determination of sex/gender orientation and identity. The UK Intersex Association is also highly critical of the label 'disorders' and points to the fact that there was minimal involvement of intersex representatives in the debate which led to the change in terminology. In May 2016, Interact Advocates for Intersex Youth also published a statement opposing pathologizing language to describe people born with intersex traits, recognizing "increasing general understanding and acceptance of the term "intersex"".

Language | LGBT and LGBTI

Intersex can be contrasted with "homosexuality" or "same-sex attraction". Numerous studies have shown higher rates of same sex attraction in intersex people, with a recent Australian study of people born with atypical sex characteristics finding that 52% of respondents were non-heterosexual, thus research on intersex subjects has been used to explore means of preventing homosexuality. However, current studies do not support a statistical correlation between genetic intersex traits and transsexual persons.

Intersex can therefore be contrasted with "transgender", which describes the condition in which one's gender identity does not match one's assigned sex. Some people are both intersex and transgender. A 2012 clinical review paper found that between 8.5% and 20% of people with intersex variations experienced gender dysphoria. In an analysis of the use of preimplantation genetic diagnosis to eliminate intersex traits, Behrmann and Ravitsky state: "Parental choice against intersex may ... conceal biases against same-sex attractedness and gender nonconformity."

The relationship of intersex to lesbian, gay, bisexual and trans, and queer communities is complex, but intersex people are often added to LGBT to create an LGBTI community. Emi Koyama describes how inclusion of intersex in LGBTI can fail to address intersex-specific human rights issues, including creating false impressions "that intersex people's rights are protected" by laws protecting LGBT people, and failing to acknowledge that many intersex people are not LGBT. Organisation Intersex International Australia states that some intersex individuals are same sex attracted, and some are heterosexual, but "LGBTI activism has fought for the rights of people who fall outside of expected binary sex and gender norms." Julius Kaggwa of SIPD Uganda has written that, while the gay community "offers us a place of relative safety, it is also oblivious to our specific needs". Mauro Cabral has written that transgender people and organizations "need to stop approaching intersex issues as if they were trans issues" including use of intersex as a means of explaining being transgender; "we can collaborate a lot with the intersex movement by making it clear how wrong that approach is".

Intersex in society | Fiction and media

An intersex character is the narrator in Jeffrey Eugenides' Pulitzer Prize-winning novel "Middlesex".

Television works about intersex and films about intersex are scarce. The Spanish-language film "XXY" won the Critics' Week grand prize at the 2007 Cannes Film Festival and the ACID/CCAS Support Award. "Faking It" is notable for providing the first intersex main character in a television show, and television's first intersex character played by an intersex actor.

Intersex in society | Civil society institutions

Intersex peer support and advocacy organizations have existed since at least 1985, with the establishment of the Androgen Insensitivity Syndrome Support Group Australia in 1985. The Androgen Insensitivity Syndrome Support Group (UK) established in 1988. The Intersex Society of North America (ISNA) may have been one of the first intersex civil society organizations to have been open to people regardless of diagnosis; it was active from 1993 to 2008.

Intersex in society | Events

Intersex Awareness Day is an internationally observed civil awareness day designed to highlight the challenges faced by intersex people, occurring annually on 26 October. It marks the first public demonstration by intersex people, which took place in Boston on October 26, 1996, outside a venue where the American Academy of Pediatrics was holding its annual conference.

Intersex Day of Remembrance, also known as Intersex Solidarity Day, is an internationally observed civil awareness day designed to highlight issues faced by intersex people, occurring annually on 8 November. It marks the birthday of Herculine Barbin, a French intersex person whose memoirs were later published by Michel Foucault in "."

Intersex in society | Flag

The intersex flag was created by Organisation Intersex International Australia in July 2013 to create a flag "that is not derivative, but is yet firmly grounded in meaning". The organization aimed to create a symbol without gendered pink and blue colors. It describes yellow and purple as "hermaphrodite" colors. The organization describes it as freely available "for use by any intersex person or organization who wishes to use it, in a human rights affirming community context".

Intersex in society | Religion

In "Hinduism", Sangam literature uses the word "pedi" to refer to people born with an intersex condition; it also refers to "antharlinga" hijras and various other hijras. Warne and Raza argue that an association between intersex and hijra people is mostly unfounded but provokes parental fear.

In "Islam", scholars of Islamic jurisprudence have detailed discussions on the status and rights of intersex based on what mainly exhibits in their external sexual organs. Yet, modern Islamic jurisprudence scholars turn to medical screening to determine the dominance of their sex. The intersex rights includes rights of inheritance, rights to marriage, rights to live like any other male or female. The rights are generally based on whether they are true hermaphrodites, or pseudo hermaphrodite. Scholars of Islamic jurisprudence generally consider their rights based on the majority of what appears from their external sexual organs.

In "Judaism", the Talmud contains extensive discussion concerning the status of two intersex types in Jewish law; namely the "androginus", which exhibits both male and female external sexual organs, and the "tumtum" which exhibits neither. In the 1970s and 1980s, the treatment of intersex babies started to be discussed in Orthodox Jewish medical halacha by prominent rabbinic leaders, for example Eliezer Waldenberg and Moshe Feinstein.

Intersex in society | Sport

Multiple athletes have been humiliated, excluded from competition or been forced to return medals following discovery of an intersex trait. Examples include Erik Schinegger, Foekje Dillema, Maria José Martínez-Patiño and Santhi Soundarajan. In contrast, Stanisława Walasiewicz (also known as Stella Walsh) was the subject of posthumous controversy.

The South African middle-distance runner Caster Semenya won gold at the World Championships in the women's 800 meter and won silver in the 2012 Summer Olympics. When Semenya won gold in the World Championships, the International Association of Athletics Federations (IAAF) requested sex verification tests. The results were not released, but Semenya was cleared to race with other women. Katrina Karkazis, Rebecca Jordan-Young, Georgiann Davis and Silvia Camporesi argued that new IAAF policies on "hyperandrogenism" in female athletes, established in response to the Semenya case, are "significantly flawed", arguing that the policy will not protect against breaches of privacy, will require athletes to undergo unnecessary treatment in order to compete, and will intensify "gender policing". They recommend that athletes be able to compete in accordance with their legal gender.

In April 2014, the BMJ reported that four elite women athletes with 5-ARD were subjected to sterilization and "partial clitoridectomies" in order to compete in sport. The authors noted that "partial clitoridectomy" was "not medically indicated, does not relate to real or perceived athletic "advantage". Intersex advocates regard this intervention as "a clearly coercive process". In 2016, the United Nations Special Rapporteur on health, Dainius Pūras, criticized "current and historic" sex verification policies, describing how "a number of athletes have undergone gonadectomy (removal of reproductive organs) and partial clitoridectomy (a form of female genital mutilation) in the absence of symptoms or health issues warranting those procedures."

Population figures

There are few firm estimates of the number of intersex people. While human rights institutions have called for the demedicalisation of intersex traits, as far as possible, medical definitions are often still used. The now-defunct Intersex Society of North America stated that:

According to Blackless, Fausto-Sterling et al., 1.7 percent of human births are intersex, including variations that may not become apparent until, for example, puberty, or until attempting to conceive. Some clinicians do not favor such definitions. According to Leonard Sax, intersex should be "restricted to those conditions in which chromosomal sex is inconsistent with phenotypic sex, or in which the phenotype is not classifiable as either male or female", around 0.018%. This definition excludes Klinefelter syndrome and many other variations. He in turn criticizes Fausto-Sterling for counting Late-Onset Congenital Adrenal Hyperplasia for 88% of her figure. His rebuttal concludes,

However, many conditions excluded from Sax's analysis are currently regarded as disorders of sex development. Individuals with those diagnoses may experience stigma and discrimination due to their sex characteristics, including sex "normalizing" interventions, and so those diagnoses and life experiences meet definitions of intersex in use by UN and other bodies. As a result, the statistical analyses by Blackless and Fausto-Sterling, despite her outdated and perceived offensive use of the term hermaphrodite, have become widely quoted, including by other clinicians. The following summarizes those frequency statistics:

Population figures can vary due to genetic causes. In the Dominican Republic, 5-alpha-reductase deficiency is not uncommon in the town of Las Salinas resulting in social acceptance of the intersex trait. Men with the trait are called "guevedoces" (Spanish for "eggs at twelve"). 12 out of 13 families had one or more male family members that carried the gene. The overall incidence for the town was 1 in every 90 males were carriers, with other males either non-carriers or non-affected carriers.

Medical classifications | Signs | Ambiguous genitalia

Ambiguous genitalia may appear as a large clitoris or as a small penis.

Because there is variation in all of the processes of the development of the sex organs, a child can be born with a sexual anatomy that is typically female or feminine in appearance with a larger-than-average clitoris (clitoral hypertrophy) or typically male or masculine in appearance with a smaller-than-average penis that is open along the underside. The appearance may be quite ambiguous, describable as female genitals with a very large clitoris and partially fused labia, or as male genitals with a very small penis, completely open along the midline ("hypospadic"), and empty scrotum. Fertility is variable.

Medical classifications | Signs | Measurement systems

The Orchidometer is a medical instrument to measure the volume of the testicles. It was developed by Swiss pediatric endocrinologist Andrea Prader. The Prader scale and Quigley scale are visual rating systems that measure genital appearance.

Medical classifications | Signs | Other signs

In order to help in classification, methods other than a genitalia inspection can be performed. For instance, a karyotype display of a tissue sample may determine which of the causes of intersex is prevalent in the case.

Medical classifications | Causes

The common pathway of sexual differentiation, where a productive human female has an XX chromosome pair, and a productive male has an XY pair, is relevant to the development of intersex conditions.

During fertilization, the sperm adds either an X (female) or a Y (male) chromosome to the X in the ovum. This determines the genetic sex of the embryo. During the first weeks of development, genetic male and female fetuses are "anatomically indistinguishable", with primitive gonads beginning to develop during approximately the sixth week of gestation. The gonads, in a "bipotential state", may develop into either testes (the male gonads) or ovaries (the female gonads), depending on the consequent events. Through the seventh week, genetically female and genetically male fetuses appear identical.

At around eight weeks of gestation, the gonads of an XY embryo differentiate into functional testes, secreting testosterone. Ovarian differentiation, for XX embryos, does not occur until approximately Week 12 of gestation. In normal female differentiation, the Müllerian duct system develops into the uterus, Fallopian tubes, and inner third of the vagina.

In males, the Müllerian duct-inhibiting hormone MIH causes this duct system to regress. Next, androgens cause the development of the Wolffian duct system, which develops into the vas deferens, seminal vesicles, and ejaculatory ducts.

By birth, the typical fetus has been completely "sexed" male or female, meaning that the genetic sex (XY-male or XX-female) corresponds with the phenotypical sex; that is to say, genetic sex corresponds with internal and external gonads, and external appearance of the genitals.

Medical classifications | Conditions

There are a variety of opinions on what conditions or traits are and are not intersex, dependent on the definition of intersex that is used. Current human rights based definitions stress a broad diversity of sex characteristics that differ from expectations for male or female bodies. During 2015, the Council of Europe, the European Union Agency for Fundamental Rights and Inter-American Commission on Human Rights have called for a review of medical classifications on the basis that they presently impede enjoyment of the right to health; the Council of Europe expressed concern that "the gap between the expectations of human rights organisations of intersex people and the development of medical classifications has possibly widened over the past decade".

Medical interventions | Rationales

Medical interventions take place to address physical health concerns, and psychosocial risks. Both types of rationale are the subject of debate, particularly as the consequences of surgical (and many hormonal) interventions are lifelong and irreversible. Questions regarding physical health include accurately assessing risk levels, necessity and timing. Psychosocial rationales are particularly susceptible to questions of necessity as they reflect social and cultural concerns.

There remains no clinical consensus about an evidence base, surgical timing, necessity, type of surgical intervention, and degree of difference warranting intervention. Such surgeries are the subject of significant contention due to consequences that include trauma, impact on sexual function and sensation, and violation of rights to physical and mental integrity. This includes community activism, and multiple reports by international human rights and health institutions and national ethics bodies.

In the cases where gonads may pose a cancer risk, as in some cases of androgen insensitivity syndrome, concern has been expressed that treatment rationales and decision-making regarding cancer risk may encapsulate decisions around a desire for surgical normalization.