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Intersex

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Intersex

Participants at the third International Intersex Forum, Malta, in December 2013

Intersex, in humans and other animals, is a variation in sex characteristics including chromosomes, gonads, or genitals that do not allow an individual to be distinctly identified as male or female. Such variation may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.[1][2]

Intersex infants and children, such as those with ambiguous outer genitalia, may be surgically and/or hormonally altered to fit into a perceived more socially acceptable sex category. However, this is considered controversial, with no firm evidence of good outcomes.[3] Such treatments may involve sterilization. Adults, including elite women athletes, have also been subjects of such treatment. Increasingly these issues are recognized as human rights abuses, with statements from UN agencies,[4][5] a national parliament,[6] and ethics institutions.[7] Intersex organizations have also issued joint statements over several years as part of an International Intersex Forum.

Research[8] in the late 20th century indicates a growing medical consensus that diverse intersex bodies are normal—if relatively rare—forms of human biology. Milton Diamond, one of the most outspoken experts on matters affecting intersex people, stresses the importance of care in the selection of language related to such people.

Intersex people have all sorts of gender identities: like all individuals, some intersex individuals may be raised as a certain sex (male or female) but then identify with another gender identity later in life, while most do not; some may not identify themselves as either exclusively female or exclusively male.[1][2][9][10]

Contents

  • Definitions 1
    • Definitions used by international institutions 1.1
    • Definitions used by national governments 1.2
      • Australia 1.2.1
  • Human rights 2
    • International Intersex Forum 2.1
    • Study on Human Rights Between the Sexes 2.2
  • Human rights and bodily autonomy 3
    • World Health Organization and UN interagency report 3.1
    • Senate Committee inquiry, Australia 3.2
    • Resolution by the Council of Europe 3.3
    • Report of UN Special Rapporteur on Torture 3.4
    • Report of Swiss National Advisory Council on Biomedical Ethics 3.5
    • Yogyakarta Principles 3.6
    • San Francisco Human Rights Investigation 3.7
    • Constitutional Court of Colombia 3.8
  • Human rights and protection from discrimination 4
    • Australia 4.1
    • South Africa 4.2
  • Gender identities and identification documents 5
    • Australia 5.1
    • Germany 5.2
    • Kenya 5.3
    • Nepal 5.4
    • New Zealand 5.5
  • Language 6
    • Self-identification with the term 'intersex' 6.1
    • Hermaphrodite 6.2
    • Disorders of sex development 6.3
    • Transgender 6.4
  • Intersex in society 7
    • Civil awareness days 7.1
    • Education 7.2
    • History 7.3
    • Religion 7.4
    • Sociological approaches 7.5
    • Sport 7.6
  • Conditions and scope 8
    • Population figures 8.1
    • Signs 8.2
      • Ambiguous genitalia 8.2.1
      • "True hermaphroditism" 8.2.2
      • Ovotestes 8.2.3
      • "Phall-o-Meter" 8.2.4
      • Other diagnostic signs 8.2.5
    • Management 8.3
      • Psychosocial support 8.3.1
      • Surgery 8.3.2
      • Experience of medical procedures and photography 8.3.3
      • Hormone treatment 8.3.4
      • Prenatal and preimplantation management, and terminations 8.3.5
    • Gender dysphoria 8.4
    • Causes 8.5
      • Typical sex development 8.5.1
      • Conditions 8.5.2
    • Complications 8.6
  • Lists about intersex issues 9
    • People and organizations 9.1
    • Society and media 9.2
  • See also 10
    • Medicine and biology 10.1
    • Human rights events 10.2
    • Related issues 10.3
  • Notes 11
  • Bibliography 12

Definitions

In humans, biological sex is determined by five factors present at birth:[11]

  • 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 five characteristics are not either all typically male or all typically female at birth are intersex.[12]

Intersex traits are not always apparent 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.

Definitions used by international institutions

The Council of Europe, in an explanatory memorandum to Resolution 1952 on Children's right to physical integrity, defines intersex as:[13]

The Foreign Affairs Council of the Council of the European Union defined intersex in guidelines on the promotion of human rights in foreign affairs (2013):[14]

The Office of the UN High Commissioner for Human Rights defined intersex as follows, as part of the Free & Equal campaign, 2013:[15]

The [110] Hida Viloria and Spanish hurdler Maria José Martínez-Patiño,[111] have argued, in the same Journal, that Olympic sex testing is applied in a way that targets only 'butch' women, those who are "masculine looking".[112][113] Upon the release of the I.O.C.'s final regulations for intersex women with hyperandrogenism in 2012, she told The New York Times Sports Editor that the issues for intersex athletes remain unresolved: "Many athletes have medical differences that give them a competitive edge but are not asked to have medical interventions to “remove” the advantage.... The real issue is not fairness, but that certain athletes are not accepted as real women because of their appearance." [114]

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,"" relating to elevated androgen levels. The athletes were all from developing countries where lifetime access to hormone replacement may prove elusive.[115] Intersex advocates regard this intervention as "a clearly coercive process".[116]

Conditions and scope

Adult (38), Klinefelter's 46,XY/47,XXY mosaic diagnosis (19): gynecomastia.

There are a variety of opinions on what conditions are and are not intersex. For instance, the defunct Intersex Society of North America (ISNA) definition states that the following conditions "sometimes involve intersex anatomy" (note this does not mean they are always intersex conditions):[117]

See also:

Population figures

The population of intersex depends on which definition is used. According to the ISNA definition above, 1 percent of live births exhibit some degree of sexual ambiguity.[118] Between 0.1% and 0.2% of live births are ambiguous enough to become the subject of specialist medical attention, including surgery to assign them to a given sex category (i.e., male or female). According to Fausto-Sterling's definition of intersex, on the other hand, 1.7 percent of human births are intersex.[119]

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.[120]

The ISNA claims that there is no concrete definition of what counts as intersex, therefore statistics on the prevalence of biological sex variations may be controversial. The INSA cites Anne Fausto-Sterling's article[121] that reviewed medical literature from 1955 to 1998, in which an attempt was made to gauge the frequency of intersex conditions.[122] The following is a summary of those frequency statistics:

Sex Variation Frequency
Not XX and not XY one in 1,666 births
Klinefelter (XXY) one in 1,000 births
Androgen insensitivity syndrome one in 13,000 births
Partial androgen insensitivity syndrome one in 130,000 births
Classical congenital adrenal hyperplasia one in 13,000 births
Late onset adrenal hyperplasia between one in 27 to 1 in 1000 individuals, depending upon the studied demographic.[123]
Vaginal agenesis one in 6,000 births
Ovotestes one in 83,000 births
Idiopathic (no discernable medical cause) one in 110,000 births
Iatrogenic (caused by medical treatment, for instance progestin administered to pregnant mother) No estimate
5 alpha reductase deficiency No estimate
Mixed gonadal dysgenesis No estimate
Complete gonadal dysgenesis one in 150,000 births
Hypospadias (urethral opening in perineum or along penile shaft) one in 2,000 births
Epispadias (urethral opening between corona and tip of glans penis) one in 117,000 births[124]

Signs

There are a range of variations between female and male types of genitalia; the Prader scale demonstrates this[125] and is well illustrated here.[126]

Ambiguous genitalia

"Hermaphrodite", 1860, by Nadar

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

Because there is variation in all of the processes of the 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. According to some,[127][128] the distinctions "male pseudohermaphrodite", "female pseudohermaphrodite" and especially "true hermaphrodite"[129] are vestiges of outdated 19th century thinking. According to others, the terms "male pseudohermaphrodite", and "female pseudohermaphrodite" are used to define the gender in terms of the histology (microscopic appearance) of the gonads.[130]

"True hermaphroditism"

A "true hermaphrodite" is defined as someone with both testicular and ovarian tissue.

In 2003, researchers at UCLA published their studies of a lateral gynandromorphic hermaphroditic zebra finch, which had a testicle on the right and an ovary on the left. Its entire body was split down the middle between female and male, with hormones from both gonads running through the blood.[131] This is an example of mosaicism or chimerism and is quite rare.

Ovotestes

Though naturally occurring true hermaphroditism in humans is unknown, there is, on the other hand, a spectrum of forms of ovotestes. The varieties include having two ovotestes or one ovary and one ovotestis, often in the form of streak gonads. Phenotype is not determinable from the ovotestes; in some cases, the appearance is "fairly typically female"; in others, it is "fairly typically male," and it may also be "fairly in-between in terms of genital development."[132]

Intersex activist Cheryl Chase is an example of someone with ovotestes.[133]

"Phall-o-Meter"

The Phall-o-meter, described by Anne Fausto-Sterling in Sexing the Body, is a metric scale. It enables assessment of acceptable phallus or clitoris measurements for boys and girls. For a girl, a medically acceptable clitoris can be no bigger than one centimeter. For a boy, an acceptable penis size must be between 2.5 centimeters and 4.5 centimeters. The range between one and 2.5 is unacceptable in either sex. Fausto-Sterling states:[134]

Other diagnostic 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.

Management

Options to manage intersex traits include surgery, hormone treatment, and psychosocial support.

Psychosocial support

A 2006 clinician "Consensus Statement on Intersex Disorders and Their Management" attempted to prioritise psychosocial support for children and families, but it also supports surgical intervention with psychosocial rationales.[84]

In 2012, the Swiss National Advisory Commission on Biomedical Ethics argued strongly in favour of improved psychosocial support, saying:[7]

A joint international statement by intersex community organizations published in 2013 sought, amongst other demands:

Surgery

Surgical procedures depend on diagnosis, and there is often concern as to whether surgery should be performed at all. Typically, surgery is performed shortly after birth.

Surgery may be necessary to assist in bowel and bladder functions. However, defenders of the practice argue that it is necessary for individuals to be clearly identified as male or female in order for them to function socially. Psychosocial reasons are often stated, such as "minimizing family concern and distress" and “mitigating the risks of stigmatization and gender-identity confusion".[84]

This is criticised by many such as Morgan Holmes and Alice Dreger, who say that surgical treatment is socially motivated and, hence, ethically questionable; without evidence, doctors regularly assume that intersex persons cannot have a clear gender identity. Parents may be advised that without surgery, their child will be stigmatized.[135]

Unlike other aesthetic surgical procedures performed on infants, such as corrective surgery for a cleft lip (as opposed to a cleft palate), genital surgery may lead to negative consequences for sexual functioning in later life (such as loss of sensation in the genitals, for example, when a clitoris deemed too large or penis is reduced/removed), or feelings of freakishness and unacceptability, which may have been avoided without the surgery. Further, since almost all such surgeries are undertaken to fashion female genitalia for the child, it is more difficult for the child to present as male if that child later identifies as or is genetically male. 20-50% of surgical cases result in a loss of sexual sensation (Newman 1991, 1992).

Additionally, parents were not often consulted on the decision-making process when choosing the sex of the child. Doctors took it upon themselves to decide what was best based on certain forms of evidence, such as hormonal levels, or other extreme forms. The idea of the environment and social norms shaping the sex of the child was completely ignored. The Intersex Society of North America stated that “For decades, doctors have thought it necessary to treat intersex with a concealment-centered approach, one that features downplaying intersex as much as possible, even to the point of lying to patients about their conditions. A lot of people in our culture also had no interest in hearing that sex doesn’t come in two simple flavors.”[118] Opponents maintain that there is no compelling evidence that the presumed social benefits of such "normalizing" surgery outweigh the potential costs.[136][137]

Intersex advocates and experts have critiqued the necessity of early interventions, citing individual's experiences of intervention and the lack of follow-up studies showing clear benefits. Specialists at the Intersex Clinic at University College London began to publish evidence in 2001 that indicated the harm that can arise as a result of inappropriate interventions, and advised minimising the use of childhood surgical procedures.[138][139][140][141][142][143][144][145][146][147]

Studies have revealed how surgical intervention has had psychological effects, leading to the impact on well-being and quality of life. Genitoplasty, plastic surgery done on the genitalia, does not ensure a successful psychological outcome for the patient and might require psychological support when the patient is trying to distinguish a gender identity.[148] Other than the possible negative psychological outcomes, surgeries, like with a vaginoplasty, can have physical outcomes, one common one being scarring, which can be a factor to insensitivity.[149] Other cases where vaginoplasty has caused complications, is that the implant or artificial vagina will not stay in place, or need further surgeries.[150] One of the reasons there are many complications is that doctors who do not specialize in genitoplasty or similar surgeries (phalloplasty, vaginoplasty) usually reconstruct the child's ambiguous genitalia.

The Swiss National Advisory Commission on Biomedical Ethics describes psychosocial interventions as problematic, with "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 a 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."[7]

In 2013, a submission by the Australasian Paediatric Endocrine Association to an Australian Senate inquiry on the Involuntary and coerced sterilisation of intersex people in Australia acknowledged that there is no firm evidence of good outcomes from appearance-related genital surgeries on infants and children. They state there is "particular concern" regarding post-surgical "sexual function and sensation".[3]

Experience of medical procedures and photography

Individuals report experiences of the trauma associated with intervention.[151] The experiential similarities of medical interventions and child sexual abuse have been discussed.[152][153][154]

Fausto-Sterling stated that doctors will either advise parents to socially raise their child as the male or female they were surgically made to be, without telling them what sex their chromosomes dictate they are, or that the parents often make this choice on their own. This often causes confusion later on in life when children experience puberty, or a relationship where they are confronted with the fact that their genitals do not function as they are told they should in a sexual education class or by friends.[155] In the short documentary "XXXY", two intersex individuals talked openly about believing that intersex individuals should be raised as such and then allowed to choose whether or not they wanted surgery performed. A physician also featured agreed with these two individuals and encouraged an end to surgery on infants.[155] Children who were born intersex and had surgery first as newborn infants and then continuously through their childhood and adolescence, report experiencing severe emotional confusion and/or devastation. The parents of these children are also impacted emotionally by the decisions they made to have their child undergo surgery from infancy through adolescence.[155][156]

Photographs of intersex children's genitalia are circulated in medical communities for documentary purposes; an example of this appears in the medical section 3.2.1 above. Problems associated with experiences of medical photography of intersex children have been discussed[157] along with the ethics, control and usage.[158]

"The experience of being photographed has exemplified for many people with intersex conditions the powerlessness and humiliation felt during medical investigations and interventions".[158]

Hormone treatment

There is widespread evidence of prenatal testing and hormone treatment to prevent intersex traits.[159][160] In 1990, a paper by Heino Meyer-Bahlburg titled Will Prenatal Hormone Treatment Prevent Homosexuality? was published in the Journal of Child and Adolescent Psychopharmacology. It examined the use of “prenatal hormone screening or treatment for the prevention of homosexuality” using research conducted on foetuses with congenital adrenal hyperplasia (CAH). Dreger, Feder, and Tamar-Mattis describe how later research constructs "low interest in babies and men – and even interest in what they consider to be men’s occupations and games – as “abnormal,” and potentially preventable with prenatal dex[amethasone]".[159]

Prenatal and preimplantation management, and terminations

The ethics of preimplantation genetic diagnosis to select against intersex traits was the subject of 11 papers in the October 2013 issue of The American Journal of Bioethics.[161] There is widespread evidence of pregnancy terminations arising from prenatal testing, as well prenatal hormone treatment to prevent intersex traits.

In April 2014, [163][164] Behrmann and Ravitsky find social concepts of sex, gender and sexual orientation to be "intertwined on many levels. Parental choice against intersex may thus conceal biases against same-sex attractedness and gender nonconformity."[165]

Gender dysphoria

The DSM-5 included a change from using Gender Identity Disorder to Gender Dysphoria. This revised code now specifically includes intersex people as people with Disorders of Sex Development.[166] This move has been criticised by intersex advocacy groups in Australia and New Zealand,[167] and criticism from the intersex community has been lodged with the appropriate DSM5 subcommittee.

The UK Intersex Association (UKIA) 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. UKIA supports the suggestion put forward by Profs. Milton Diamond and Hazel Beh that the more neutral and less pathologising term "Variations of Sex Development" would be more appropriate in medical discussion.

Causes

Typical sex development

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.[168] 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.[168] 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.[168] 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.

Conditions

The final body appearance does not always correspond with what is dictated by the genes. In other words, there is sometimes an incongruity between genetic (or chromosomal) and phenotypic (or physical appearance) sex. Citing medical research regarding other factors that influence sexual differentiation, the Intersex Society of North America challenges the XY sex-determination system's assumption that chromosomal sex is the determining factor of a person's "true" biological sex.[169]

X/Y Name Description
XX Congenital adrenal hyperplasia (CAH) The most common cause of sexual ambiguity is congenital adrenal hyperplasia (CAH), an endocrine disorder in which the adrenal glands produce abnormally high levels of virilizing hormones in utero. The genes that cause CAH can now be detected in the developing embryo. As Fausto-Sterling mentioned in chapter 3 of Sexing the Body, “a woman who suspects she may be pregnant with a CAH baby (if she or someone in her family carries CAH) can undergo treatment and then get tested.” To prevent an XX-CAH child's genitalia from becoming masculinized, a treatment, which includes the use of the steroid dexamethasone, must begin as early as four weeks after formation. Although many do not favor this process because "the safety of this experimental therapy has not been established in rigorously controlled trials", it does allow physicians to detect abnormalities, therefore starting treatment right after birth. Starting treatment as soon as an XX-CAH baby is born not only minimizes, but also may even eliminate the chances of genital surgery from being performed.[170] In XX-females, this can range from partial masculinization that produces a large clitoris, to virilization and male appearance. The latter applies in particular to Congenital adrenal hyperplasia due to 21-hydroxylase deficiency, which is the most common form of CAH. Individuals born with XX chromosomes affected by 17α-hydroxylase deficiency are born with female internal and external anatomy, but, at puberty, neither the adrenals nor the ovaries can produce sex-hormones, inhibiting breast development and the growth of pubic hair. See below for XY CAH 17α-hydroxylase deficiency.
XX Progestin-induced virilisation In this case, the excess androgen hormones are caused by use of progestin, a drug that was used in the 1950s and 1960s to prevent miscarriage. These individuals normally have internal and external female anatomy, with functional ovaries and will therefore have menstruation. They develop, however, some male secondary sex characteristics and they frequently have unusually large clitorises. In very advanced cases, such children have initially been identified as males.[171]
XX Freemartinism This condition occurs commonly in all species of castrated male (a steer). The male twin is not significantly affected, although (if he remains entire) his testes may be slightly reduced in size. The degree of masculinization of the freemartin depends on the stage of pregnancy at which the placental fusion occurs – in about ten percent of such births no fusion occurs and both calves develop normally as in other mammals.
XY Androgen insensitivity syndrome (AIS) People with AIS have a Y chromosome, (typically XY), but are unable to metabolize androgens in varying degrees. Cases with typically female appearance and genitalia are said to have complete androgen insensitivity syndrome (CAIS). People with CAIS have a clitoromegaly, or a small penis, which is called micropenis or microphallus; hypospadias and cryptorchidism may also be present, with one or both testes undescended, and hypospadias appearing just below the glans on an otherwise typical male penis, or at the base of the shaft, or at the perineum and including a bifid (or cleft) scrotum.
XY 5-alpha-reductase deficiency (5-ARD) The condition affects individuals with a Y chromosome, making their bodies unable to convert testosterone to dihydrotestosterone (DHT). DHT is necessary for the development of male genitalia in utero, and plays no role in female development, so its absence tends to result in ambiguous genitalia at birth; the effects can range from infertility with male genitalia to male underdevelopment with hypospadias to female genitalia with mild clitoromegaly. The frequency is unknown, and children are sometimes misdiagnosed as having AIS.[172] Individuals can have testes, as well as vagina and labia, and a small penis capable of ejaculation that looks like a clitoris at birth. Such individuals are usually raised as girls. The lack of DHT also limits the development of facial hair.
XY Congenital adrenal hyperplasia (CAH) In individuals with a Y chromosome (typically XY) who have Congenital adrenal hyperplasia due to 17 alpha-hydroxylase deficiency, CAH inhibits virilization, unlike cases without a Y chromosome.
XY Persistent Müllerian duct syndrome (PMDS) The child has XY chromosomes typical of a male. The child has a male body and an internal uterus and fallopian tubes because his body did not produce Müllerian inhibiting factor during fetal development.
XY Anorchia Individuals with XY chromosomes whose gonads were lost after 14 weeks of fetal development. People with Anorchia have no ability to produce the hormones responsible for developing male secondary sex characteristics nor the means to produce gametes necessary for reproduction due to the lack of gonads. They may develop typically feminine secondary sex characteristics without or despite the administration of androgens to artificially initiate physical sex differentiation (typically planned around the age of puberty). Psychological and neurological gender identity may solidify before the administration of androgens, leading to gender dysphoria, as anorchic individuals are typically assigned male at birth.
XY Gonadal Dysgenesis It has various causes and are not all genetic; a catch-all category.
It refers to individuals (mostly XY) whos gonads don't develop properly. Clinical features are heterogeneous.[173]
XY Hypospadias It is caused by various causes,including alterations in testosterone metabolism.
The urethra does not run to the tip of the penis. In mild forms, the opening is just shy of the tip; in moderate forms, it is along the shaft; and in severe forms, it may open at the base of the penis.[173]
Other Unusual chromosomal sex In addition to the most common XX and XY chromosomal sexes, there are several other possible combinations, for example Turner syndrome (XO), Triple X syndrome (XXX), Klinefelter syndrome, (XXY) and variants (XXYY, XXXY, XXXXY), XYY syndrome, de la Chapelle syndrome (XX male), Swyer syndrome (XY female).
Other Mosaicism and chimerism A mix can occur, where some of the cells of the body have the common XX or XY, while some have one of the less usual chromosomal contents above. Such a mixture is caused by either mosaicism or chimerism. In mosaicism, the mixture is caused by a mutation in one of the cells of the embryo after fertilization, whereas chimerism is a fusion of two embryos. In alternative fashion, it is simply a mixture between XX and XY, and does not have to involve any less-common genotypes in individual cells. This, too, can occur both as chimerism and as a result of one sex chromosome having mutated into the other.[174] However, not all cases of mosaicism and chimerism involve intersex.

Complications

In the cases where nonfunctional testes are present, there is a risk that these develop cancer. Therefore, doctors either remove them by orchidectomy or monitor them carefully. This is the case for instance in androgen insensitivity syndrome.[175]

In a major Parliamentary report in Australia, published in October 2013, the Senate Community Affairs References committee was "disturbed" by the possible implications of current practices in the treatment of cancer risk. The committee stated:

Lists about intersex issues

People and organizations

Society and media

See also

Medicine and biology

Human rights events

Related issues

Notes

  1. ^ a b c Money, John; Ehrhardt, Anke A. (1972). Man & Woman Boy & Girl. Differentiation and dimorphism of gender identity from conception to maturity. USA: The Johns Hopkins University Press.  
  2. ^ a b c d Domurat Dreger, Alice (2001). Hermaphrodites and the Medical Invention of Sex. USA: Harvard University Press.  
  3. ^ a b Submission 88 to the Australian Senate inquiry on the involuntary or coerced sterilisation of people with disabilities in Australia, Australasian Paediatric Endocrine Group (APEG), 27 June 2013
  4. ^ a b c Report of the UN Special Rapporteur on Torture, Office of the UN High Commissioner for Human Rights, February 2013.
  5. ^ a b Eliminating forced, coercive and otherwise involuntary sterilization, An interagency statement, World Health Organization, May 2014.
  6. ^ a b c d e f g h i Involuntary or coerced sterilisation of intersex people in Australia, Australian Senate Community Affairs Committee, October 2013.
  7. ^ a b c d e On the management of differences of sex development, Ethical issues relating to "intersexuality", Opinion No. 20/2012, Swiss National Advisory Commission on Biomedical Ethics, November 2012.
  8. ^ Pediatric gender assignment : a critical reappraisal ; [proceedings from a conference ... in Dallas in the spring of 1999 which was entitled "pediatric gender assignment - a critical reappraisal"]. New York, NY [u.a.]: Kluwer Acad. / Plenum Publ. 2002.  
  9. ^ a b Furtado, P. S. et al. (2012) Gender dysphoria associated with disorders of sex development in Nat. Rev. Urol. 9, 620–627 (2012); published online 9 October 2012; doi:10.1038/nrurol.2012.182
  10. ^ a b Marañón, Gregorio (1929). Los estados intersexuales en la especie humana. Madrid: Morata. 
  11. ^ Knox, David; Schacht, Caroline. (2010) Choices in Relationships: An Introduction to Marriage and the Family. 11 ed. Cengage Learning. ISBN 9781111833220. p. 64.
  12. ^ "What is intersex?". Intersex Society of North America. Retrieved 2013-11-18. 
  13. ^ a b Children's right to physical integrity, Council of Europe Parliamentary Assembly, Report Doc. 13297, 6 September 2013.
  14. ^ a b Guidelines to Promote and Protect the Enjoyment of All Human Rights by Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) Persons, Foreign Affairs Council of the Council of the European Union, 24 June 2013.
  15. ^ a b Free & Equal campaign Fact Sheets, LGBT Rights: Frequently Asked Questions, Office of the UN High Commissioner for Human Rights, 2013, via UN Free & Equal.
  16. ^ a b Gender and Genetics, World Health Organization Genomics resource centre, 2013.
  17. ^ a b c d Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act 2013, No. 98, 2013, ComLaw, C2013A00098, 2013.
  18. ^ a b c d e "Australian Government Guidelines on the Recognition of Sex and Gender, 30 May 2013". Retrieved 6 October 2014. 
  19. ^ 3rd International Intersex Forum concluded, ILGA-Europe (Creative Commons statement), 2 December 2013
  20. ^ Global intersex community affirms shared goals, Star Observer, December 4, 2013
  21. ^ Public Statement by the Third International Intersex Forum, Advocates for Informed Choice, 12 December 2013
  22. ^ Public statement by the third international intersex forum, Organisation Intersex International Australia, 2 December 2013
  23. ^ Öffentliche Erklärung des Dritten Internationalen Intersex Forum, (German) Intersex Austria, 8 December 2013
  24. ^ IntersexUK consensus paper.3rd International IntersexForum concluded..., Intersex UK on Twitter, 3 December 2013
  25. ^ Derde Internationale Intersekse Forum(Dutch), Nederlandse Netwerk Intersekse/DSD (NNID), 3 December 2013
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Writing in the

Caster Semenya is a South African middle-distance runner. She won gold at the World Championships in the women's 800 meter and also competed in the 2012 Summer Olympics where she won the silver medal. It is not firmly established if she is intersex or not, but her appearance is such that she was subjected to sex testing. When Semenya won gold in the World Championships, the International Association of Athletics Federations (IAAF) requested gender verification tests due to her deep voice, muscular build, and her rapid improvement in her running times. The results were not released, but Semenya was cleared to race with other women.[109]

Multiple intersex athletes have been humiliated, excluded from competition or had to return medals following discovery of their intersex status, such as Erik Schinegger, Pinki Pramanik and Foekje Dillema. Santhi Soundarajan, an Indian athlete who competes in the middle distance track events, was stripped of a silver medal won at the 2006 Asian Games after failing a sex verification test, disputing her eligibility to participate in the women's competition. In contrast, Stanisława Walasiewicz (also known as Stella Walsh) was the subject of posthumous controversy.

Sport

The first sociologist to work on 'intersexuality' was Harold Garfinkel in 1967 using a method derived from sociological phenomenology he called ethnomethodology. He based his analysis on the everyday commonsense understandings of 'Agnes', a woman undergoing social and surgical gender reassignment.[107] Ethnomethodology was also used in 1978 by Kessler and McKenna, who argue that, while gender can be seen as a social accomplishment, cross-cultural studies render gender as problematic as they highlight how it is usually regarded as a fact, when it can be shown to be constructed in different ways. They point to different cultural approaches to gender roles, and how 'hermaphrodites' and 'berdaches' are incorporated socially, as disruptive to fixed ideas about sex, gender, and gender-roles. They argue that what we 'know' about gender is grounded in the 'everyday social construction of a world of two genders', where gender attribution seems more important than gender differentiation.[108]

Sociological approaches

In 2002 at the Reform seminary Reconstructionist Rabbinical College which addressed the psychological, legal, and religious issues affecting people who are intersex or transsexual.[106]

In the 1970s and 1980s, the treatment of intersex babies started to be discussed in Orthodox medical halacha by prominent rabbinic leaders, for example Eliezer Waldenberg and Moshe Feinstein. [105]

Religion

Anne Fausto-Sterling coined the words herm (for "true hermaphrodite"), merm (for "male pseudo-hermaphrodite"), and ferm (for "female pseudo-hermaphrodite"),[104] and proposed that these be recognized as sexes along with female and male. Her terms were "tongue-in-cheek"; she no longer advocates these terms even as a rhetorical device. The activist Cheryl Chase criticized these terms in a letter to The Sciences, also criticizing the traditional standard of medical care. Chase announced the creation of the Intersex Society of North America.

Some groups, such as OII, who argue that the various degrees of intersex are natural human variations that should not be subject to correction.

Since the rise of modern medical science in Western societies, some intersex people with ambiguous external genitalia have had their genitalia surgically modified to resemble either female or male genitals. Since the 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.[101] Contemporary social activists, scientists and health practitioners, among others, have begun to revisit the issue. Awareness of the existence of physical sexual variation in human beings has increased.

During the Victorian era, medical authors introduced the terms "true hermaphrodite" for an individual who has both ovarian and testicular tissue, verified under a microscope, "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. In Europe, the term 'intersexual' was first to be used before the Second World War.[97][98] The first suggestion to replace the term 'hermaphrodite' with 'intersex' came from British specialist Cawadias in the 1940s.[78] This suggestion was taken up by specialists in the UK during the 1960s, by both those who rejected Money's framework (then emerging from the USA),[99] and those who endorsed that approach.[100]

Enki answered Ninmah: "I will counterbalance whatever fate – good or bad – you happen to decide." Ninmah took clay from the top of the abzu [ab = water, zu = far] in her hand and she fashioned from it first a man who could not bend his outstretched weak hands. Enki looked at the man who cannot bend his outstretched weak hands, and decreed his fate: he appointed him as a servant of the king.
... [Three men and one woman with atypical biology are formed and Enki gives each of them various forms of status to ensure respect for their uniqueness] ...
Sixth, she fashioned one with neither penis nor vagina on its body. Enki looked at the one with neither penis nor vagina on its body and gave it the name Nibru [eunuch(?)], and decreed as its fate to stand before the king.

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. An example is one of the Sumerian creation myths from more than 4,000 years ago. The story has Ninmah, a mother goddess, fashioning humankind out of clay.[96] She boasts that she will determine the fate – good or bad – for all she fashions. Enki, the father god, retorts as follows.

Intersex people are treated in different ways by different cultures. In some cultures, such people were included in larger "third gender" or gender-blending social roles along with other individuals. In most societies, intersex people have been expected to conform to either a female or a male gender role.[93] Surgeons pinpointed intersex babies as a "social emergency" once they were born.[94] The parents of the intersex babies were not content about the situation. Psychologists, sexologists, and researchers had a theory that it was better if the baby's genitalia were changed when they were younger than when they were a mature adult. At the time, these scientists believed that early intervention helped avoid gender identity confusion.[95]

History

In secondary schools, biology and sex education instructors often place most emphasis on the most common XX and XY genotypes. Thus, people nowadays may be more likely to look towards the sex chromosomes than, for example, the histology of the gonads. However, according to researcher Eric Vilain at the University of California, Los Angeles, "the biology of gender is far more complicated than XX or XY chromosomes".[91] Many different criteria have been proposed, and there is little consensus.[92]

Education

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 November 8. It marks the birthday of Herculine Barbin, a French intersex person whose memoirs were later published by Michel Foucault in Herculine Barbin: Being the Recently Discovered Memoirs of a Nineteenth-century French Hermaphrodite.

Intersex Awareness Day is an internationally observed civil awareness day designed to highlight the challenges faced by intersex people, occurring annually on October 26.

Civil awareness days

Intersex in society

Transgender is an umbrella term for persons (unlike intersex) whose gender identity, expression and behavior do not match the typically associated sex that they were born with. Gender identity refers to the internal notion of being male or female. Gender expression refers to the nature in which a person communicates their gender.

The term transgender describes the condition in which one's gender identity does not match one's assigned sex. Some individuals may be both intersex and transgender, but the two terms are not synonymous.[90]

Transgender

[89] [88] Alternatives to categorizing intersex conditions as "disorders" have been suggested, including "variations of sex development".[87][86][85] 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.

"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. A number of critics of traditional terminology, including the now defunct Intersex Society of North America, intersex activists, and some medical experts moved to eliminate the term "intersex" in medical usage, replacing it with disorders of sex development in order to avoid conflating anatomy with identity.[80] Members of the Lawson Wilkins Pediatric Endocrine Society[81] and the European Society for Paediatric Endocrinology[82] accepted this term in their "Consensus statement on management of intersex disorders" published in the Archives of Disease in Children[83] and in Pediatrics.[84]

Disorders of sex development

Currently, however, 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 can be stigmatizing and misleading.[79] In reality, 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.

A [78]

Hermaphrodite

Some people with intersex traits self-identify as intersex, and some do not.[73][74] Some [75] while others use more medicalized language such as "people with intersex conditions",[76] or people "with intersex conditions or DSDs (differences of sex development)" and "children born with variations of sex anatomy".[77]

Self-identification with the term 'intersex'

Research in the late 20th century has led to a growing medical consensus that diverse intersex bodies are normal, but relatively rare, forms of human biology.[2][70][71] Milton Diamond, one of the most outspoken experts on matters affecting intersex people, stresses the importance of care in the selection of language related to intersex people:

Language

Passports are available with an 'X' sex descriptor.[49] These were originally introduced for people transitioning gender[69]

Birth certificates are available at birth showing "indeterminate" sex if it is not possible to assign a sex. The New Zealand Department of Internal Affairs states, "A person’s sex can be recorded as indeterminate at the time of birth if it cannot be ascertained that the person is either male or female, and there are a number of people so recorded."[68]

New Zealand

The term "other" may be used in citizenship and other documents to classify intersex and third gender persons in Nepal.

Nepal

In 2014, a Kenyan court ordered the Kenyan government to issue a birth certificate to a five-year-old child born with ambiguous genitalia.[66] In Kenya a birth certificate is necessary for attending school, getting a national identity document, and voting.[67]

Kenya

Germany is the first European country that has allowed "indeterminate" sex as an option. A report by the German Ethics Council stated that the law was passed because, "Many people who were subjected to a 'normalizing' operation in their childhood have later felt it to have been a mutilation and would never have agreed to it as adults." [63] Deutsche Welle reported that an "indeterminate" 'option' was made available for the birth certificates of intersex infants with ambiguous genitalia on 1 November 2013.[63] The move is controversial with many intersex advocates in Germany and elsewhere suggesting that it might encourage surgical interventions.[63][64][65]

Germany

Alex MacFarlane is believed to be the first person in Australia to obtain a birth certificate recording sex as indeterminate. This is stated by The West Australian to be on the basis of an indeterminate birth certificate issued by the State of Victoria. The newspaper reported in January 2003 that the Department of Foreign Affairs and Trade "had decided to accommodate people whose birth certificates recorded their sex as indeterminate ... Alex is also believed to be the first Australian issued with a birth certificate acknowledging a gender other than male or female".[56] Councillor Tony Briffa JP, of the City of Hobsons Bay, Victoria, previously acknowledged as the world's first openly intersex mayor,[59][60] states on Tony's website that "my birth certificate is silent as to my sex".[61][62]

[58] Birth certificates are a State and Territory issue in Australia.

Australian federal guidelines enable intersex (and other) people to identify gender as male, female or X on all federal documents, including passports. Documentary evidence must be witnessed by a doctor or psychologist, but medical intervention is not required.[18] Alex MacFarlane received the first Australian passport with an 'X' sex descriptor, reported in January 2003.[48][56][57]

Australia

Distinctions between sex and gender are lost in many official or legal documents,[18] and also online. In 2014, Facebook introduced dozens of options for users to specify their gender, including the option of "intersex'.[55]

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.[48][49] 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.[50][51][52][53][54]

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; some may not identify themselves as either exclusively female or exclusively male.[1][2][9][10] Research has shown gender identities of intersex individuals to be independent of sexual orientation, though some intersex conditions also affect an individual's sexual orientation.[47] Recent legal and regulatory developments in Australia have distinguished "intersex status" from both gender identity and sexual orientation.[17][18][43][44]

Gender identities and identification documents

In South Africa, the Judicial Matters Amendment Act, 2005 (Act 22 of 2005) amended the Promotion of Equality and Prevention of Unfair Discrimination Act, 2000 (Act 4 of 2000) to include intersex within its definition of sex:[46]

South Africa

"Intersex status" became a protected attribute in Australian federal law on 1 August 2013, recognising that intersex status is unrelated to gender identity, sexual orientation, sex or disability. The legislation, the Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act 2013, passed Parliament without requiring a vote on 25 June 2013.[17][43] The Act facilitates exemptions in competitive sport but does not support exemptions on religious grounds. The Explanatory Memorandum to the Act states,

Australia

Human rights and protection from discrimination

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.[41] 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.[42] The court case has led to setting legal guidelines for doctors' surgical practice on intersex children.

Constitutional Court of Colombia

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."[38][39][40] The report found that:

San Francisco Human Rights Investigation

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:

Yogyakarta Principles

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.

In late 2012, the Swiss National Advisory Commission on Biomedical Ethics reported on intersex. The Commission report makes a strong case against medical intervention for "psychosocial" reasons:[7]

Report of Swiss National Advisory Council on Biomedical Ethics

On 1 February 2013, Juan E Mendés, 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:[4]

Report of UN Special Rapporteur on Torture

In October 2013, the Council of Europe adopted a resolution 1952, 'Children's right to physical integrity'. It calls on member states to[37]

Resolution by the Council of Europe

Organisation Intersex International Australia welcomed the report, saying that,

The report makes 15 recommendations, including ending cosmetic genital surgeries on infants and children and providing for legal oversight of individual cases.[6]

and:

They commented:

In October 2013, the Australian Senate published a report entitled Involuntary or coerced sterilisation of intersex people in Australia.[6][33][34][35][36] The Senate found that "normalising" surgeries are taking place in Australia, often on infants and young children, with preconceptions that it described as "disturbing":

Senate Committee inquiry, Australia

In May 2014, 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.[32] 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.[5]

World Health Organization and UN interagency report

Human rights and bodily autonomy

  • Genital "normalization" surgery is widespread: "Nearly all over the world, intersex bodies are considered to be barely, or not at all, capable of being integrated into the social order. Therefore, genital surgery is performed from infancy to adolescence and adulthood in all examined countries."
  • Gonadal tissue is removed in most countries, between childhood and adolescence. Hormone treatments are administered. There is minimal aftercare.
  • Birth registrations, with a sex assignment, is required in most countries, within 4 weeks of birth.
  • Intersex is treated as a taboo subject in all countries studied. Intersex people experience prejudice, often due to gender non-conforming behaviour and appearance.
  • Human rights-based activism is only recently established, and the number of NGOs small and volunteer-based.

In September 2013, the IVIM (OII-Germany).[28][29][30][31] The countries studied were Australia, Belgium, France, Germany, New Zealand, Serbia, South Africa, Taiwan, Turkey, Uganda, Ukraine, and Uruguay. Ghattas found that intersex people are discriminated against worldwide:

Study on Human Rights Between the Sexes

Each year, the forum has made statements about human rights and bodily autonomy of intersex people. The third statement called for an end to 'normalising' practices, prenatal screening and selective abortions, infanticide and killings, and non-consensual sterilisation. It also made statements on the sex and gender assignment of intersex children and adults.[19][20][21][22][23][24][25][26][27]

Annual Intersex UK, Nederlandse Netwerk Intersekse/DSD (NNID), IVIM/OII Deutschland, Oii-Chinese and others.

International Intersex Forum

Human rights

Australian guidelines on the recognition of sex and gender (2013) explicitly recognise that intersex is innate, and that intersex people may identify their gender in three broad, legally recognised, ways:[18]

The Australian federal Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act 2013 defines intersex as:[17]

Australia

Definitions used by national governments

[16]

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