Intersex
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Intersex, in humans and other animals, describes variations in sex characteristics including chromosomes, gonads, or genitals "that do not fit typical binary notions of male or female bodies".[1] Such variations may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.[2][3] Intersex people were previously referred to ashermaphrodites, but the term has fallen out of favor as it is considered to be misleading and stigmatizing.
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.[4] Such treatments may involve sterilization. Adults, including elite female athletes, have also been subjects of such treatment.[5][6]Increasingly these issues are recognized as human rights abuses, with statements from international[7][8] and national human rights and ethics institutions.[9][10] Intersex organizations have also issued statements, including joint statements as part of an International Intersex Forum.
Research in the late 20th century indicates a growing medical consensus that diverse intersex bodies are normal—if relatively rare—forms of human biology.[11]
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.[12] In April 2015, Malta became the first country to outlaw non-consensual medical interventions to modify sex anatomy, including that of intersex people.[13][14]
Like all individuals, intersex people have various gender identities. Most identify as either a woman or man, while some may identify as neither exclusively a woman nor exclusively a man. Some intersex individuals may be raised as a woman or man but then identify with another gender identity later in life.[2][3][15][16]
 “ What It’s Like To Be Intersex”, Lizz Warner, BuzzFeed | |
| "Intersexion" documentary,Wikipedia page |
Definitions[edit]
According to the UN Office of the High Commissioner for Human Rights:
The Council of Europe, in an explanatory memorandum to Resolution 1952 on Children's right to physical integrity, defines intersex as:[17]
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):[18]
A more medicalized definition states that biological sex is determined by five factors present at birth:[19]
- 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.[20]
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.
History[edit]
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.[21] 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 humanity out of clay.[22] She boasts that she will determine the fate – good or bad – for all she fashions:
The Greek historian Diodorus Siculus wrote of "hermaphroditus" in the first century BCE:
Numerous historical accounts exist, including those of Le Van Duyet (18th/19th-century Vietnam), Thomas(ine) Hall (17th-century USA), Gottlieb Göttlich (19th-century Germany), and Levi Suydam (19th-century USA). The memoirs of 19th-century Frenchwoman Herculine Barbin were published by Michel Foucault in 1980.
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.[24][25] The first suggestion to replace the term 'hermaphrodite' with 'intersex' came from British specialist Cawadias in the 1940s.[26] 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),[27] and those who endorsed that approach.[28]
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. Surgeons pinpointed intersex babies as a "social emergency" once they were born.[29] The parents of the intersex babies were not content about the situation. Psychologists, sexologists, and researchers frequently still believe that it is better for a baby's genitalia to be changed when they were younger than when they were a mature adult. These scientists believe that early intervention helped avoid gender identity confusion.[30] 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.[31] Dialogue 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.[32]Numerous civil society organizations and human rights institutions now call for an end to unnecessary "normalizing" interventions.
Human rights[edit]
Main article: Intersex human rights
Research indicates a growing consensus that diverse intersex bodies are normal—if relatively rare—forms of human biology,[11] and human rights institutions are placing increasing scrutiny on medical practices and issues of discrimination against intersex people. The Council of Europe highlights several areas of concern:
- unnecessary "normalising" treatment of intersex persons, and unnecessary pathologisation of variations in sex characteristics.
- 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.[33]
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.[13][14] 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.[33] These developments have been accompanied by International Intersex Forums and increased cooperation amongst civil society organizations.
Civil society institutions[edit]
See also: International Intersex Forum and List of intersex organizations
In recent years, intersex organizations and human rights defenders have begun to meet and collaborate.
Annual International Intersex Forums have taken place since 2011. These have brought together intersex activists and organisations from around the world, resulting in joint statements about human rights, including bodily autonomy and sex assignments.[34][35][36][37][38][39][40]
In 2015, the Astraea Lesbian Foundation for Justice established the first Intersex Human Rights Fund.[41][42]
Protection from non-consensual medical interventions[edit]
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.[43] 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. One country has prohibited such interventions.
A case taken to the Constitutional Court of Colombia led to changes in their treatment from 2002.[44] The case significantly reduced the power of doctors and parents to decide surgical procedures on the children's ambiguous genitalia.[45] 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.[13][14] The Act recognizes a right to bodily integrity and physical autonomy, explicitly prohibiting modifications to children's sex characteristics for social factors. It was widely welcomed by civil society organizations.[46][47][48]
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.[49][50]
Protection from discrimination[edit]
Three countries have so far explicitly protected intersex people from discrimination.
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.[51]
In Australia "Intersex status" became a protected attribute in the federal Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act on 1 August 2013, distinguishing intersex status from gender identity, sexual orientation, sex, and disability.[52][53]
In April 2015, Malta passed a Gender Identity Gender Expression and Sex Characteristics Act that protects intersex people from discrimination on grounds of "sex characteristics", and also recognizes a right to bodily integrity and physical autonomy.[54]
Access to justice[edit]
Further information: Christiane Völling
Access to reparation appears limited, with a scarcity of legal cases, such as the 2011 case of Christiane Völling in Germany.[56] Völling is the first intersex person known to have successfully sued for damages in a case brought for non-consensual surgical intervention.[12] A second successful case in Germany, taken by Michaela Raab, was reported in 2015.[57]
In the U.S. the "M.C." legal case, advanced by Advocates for Informed Choice with the Southern Poverty Law Centre is still before the courts.[58][59]
Access to information[edit]
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.[10][60][61] Disclosure also included telling people that they would never meet anyone else with the same condition.[9] Access to medical records has also historically been challenging.[33] Yet 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.[62] The Council of Europe[33] and World Health Organization[63] acknowledge the necessity for improvements in information provision, including access to medical records.
Recognition of gender identities[edit]
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.[2][3][15][16] Like non-intersex people, some intersex individuals may not identify themselves as either exclusively female or exclusively male. 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.[64]
Distinctions between sex and gender are lost in many official or legal documents,[65] and also in public discussion. In 2014, Facebook introduced dozens of options for users to specify their gender, including the option of "intersex'.[66]
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.[67][68] 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.[69][70][71][72][73]
The third International Intersex Forum called for infants and children to be assigned male or female, on the understanding that later identification may differ:
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."[33] The Issue Paper argues that "further reflection on non-binary legal identification is necessary".
Human rights investigations and statements[edit]
Multiple local, national and international human rights bodies have published investigations and reports on the human rights of intersex people.
A 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."[74][75][76] It found that "normalizing" interventions done without the patient's informed consent are inherent human rights violations.
The 2006 Yogyakarta Principles on the Application of International Human Rights Law in relation 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. Yogyakarta Principle 18 called on states 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 late 2012, the Swiss National Advisory Commission on Biomedical Ethics made a strong case against medical intervention for "psychosocial" reasons, arguing that "particularly great risk of insufficient respect being accorded to the child's (future) self-determination and its physical integrity"[10] The report made 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". It also recommended criminal sanction for non-medically necessary genital surgeries.
On 1 February 2013, Juan E. MĂ©ndez, 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.[7] In the same year, the Australian Senate published a report entitled Involuntary or coerced sterilisation of intersex people in Australia.[9][77][78][79] The Senate found that "normalising" surgeries are taking place in Australia, often on infants and young children, with preconceptions that it described as "disturbing".[9]
In May 2014, the World Health Organization issued a joint statement on Eliminating forced, coercive and otherwise involuntary sterilization, An interagency statement with theOHCHR, UN Women, UNAIDS, UNDP, UNFPA and UNICEF. The report questions the necessity of involuntary surgical "sex-normalising or other procedures" on "intersex persons", patients' ability to consent, and a weak evidence base.[80] The report proposes a set of guiding principles for medical treatment, including ensuring patient autonomy in decision-making, ensuring non-discrimination, accountability and access to remedies.[8]
In a wide-ranging analysis, 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 understandings of sex and gender make intersex people "especially vulnerable" to human rights breaches. The Council'sCommissioner for Human Rights recognized, for the first time, a right not to undergo sex assignment treatment.[33]
The Council of Europe,[33] and the European Union Agency for Fundamental Rights[81] and Inter-American Commission on Human Rights[82] have each, in 2015, called for a review of medical classifications that unnecessarily medicalize intersex traits[33][81][82]
Language[edit]
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.[3][83][84] Clinician and researcher Milton Diamond stresses the importance of care in the selection of language related to intersex people:
Self-identification with the term 'intersex'[edit]
Some people with intersex traits self-identify as intersex, and some do not.[86][87] Some intersex organizations reference "intersex people" and "intersex variations or traits"[88]while others use more medicalized language such as "people with intersex conditions",[89] or people "with intersex conditions or DSDs (differences of sex development)" and "children born with variations of sex anatomy".[90]
Hermaphrodite[edit]
Main article: Hermaphrodite
A hermaphrodite is a plant or animal that has both male and female reproductive organs. Until the mid-20th century, "hermaphrodite" was used synonymously with "intersex".[26]
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.[91] 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.
Disorders of sex development[edit]
Main article: Disorders of sex development
"Disorders of sex development" (DSD) is a contested term,[92] defined to include congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical. Members of the Lawson Wilkins Pediatric Endocrine Society[93] and the European Society for Paediatric Endocrinology[94] adopted this term in their "Consensus statement on management of intersex disorders" published in the Archives of Disease in Children[95] and in Pediatrics.[96] 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.[97]
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.[98][99][100] Alternatives to categorizing intersex conditions as "disorders" have been suggested, including "variations of sex development".[101] 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.[102]
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.
Transgender[edit]
Main article: Transgender
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.[103][104]
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 classified as. Gender identity refers to the internal notion of the gender a person identifies as, for example, being a man, woman or non-binary. Gender expression refers to the nature in which a person communicates their gender, for example a male may present femininely.
Intersex in society[edit]
Media representations[edit]
Television works about intersex and Films about intersex are scarce. Amongst these, Faking It (2014 TV series) is notable for providing the first intersex main character in a television show,[105] and television's first intersex character played by an intersex actor.[106]
Civil awareness days[edit]
Intersex Awareness Day is an internationally observed civil awareness day designed to highlight the challenges faced by intersex people, occurring annually on October 26.
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.
Flag[edit]
The Intersex Pride 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".[107]
Religion[edit]
Hinduism[edit]
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.[108] Warne and Raza argue that an association between intersex and hijra people is mostly unfounded, but popular misunderstandings "cause tremendous fear in the parents" of intersex infants and children.[109]
Judaism[edit]
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.[110]
In 2002 at the Reform Jewish seminary Hebrew Union College-Jewish Institute of Religion in New York, the Reform rabbi Margaret Wenig organized the first school-wide seminar at any rabbinical school which addressed the psychological, legal, and religious issues affecting people who are intersex or transsexual,[111] and in 2003 she was also the first to organize a similar school-wide seminar at the Reconstructionist Rabbinical College.[111]
Sport[edit]
Multiple intersex athletes have been humiliated, excluded from competition or been forced to return medals following discovery of their intersex status. Examples include 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.[citation needed]
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. Her appearance is such that she was subjected to gender testing. When Semenya won gold in the World Championships, theInternational 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.[112]
Writing in the American Journal of Bioethics, Katrina Karkazis, Rebecca Jordan-Young, Georgiann Davis and Silvia Camporesi have argued that new IAAF policies on "hyperandrogenism" in female athletes, established in response to the Caster Semenya case, are "significantly flawed". They argue 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.[113] Hida Viloria and Spanish hurdler Maria JosĂ© MartĂnez-Patiño,[114] 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".[115][116] Upon the release of the I.O.C.'s final regulations for intersex women withhyperandrogenism 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." [117]
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.[5] Intersex advocates regard this intervention as "a clearly coercive process".[118]
Population figures[edit]
The number of intersex people depends on the definition used. The Intersex Society of North America suggested that 1 percent of live births exhibit some degree of sexual ambiguity.[119] 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).[30] According to Blackless, Fausto-Sterling et al., on the other hand, 1.7 percent of human births are intersex.[120][30]
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.[121]
Given that many conditions excluded from Sax's analysis are termed Disorders of Sex Development, such individuals may be subjected to sex "normalizing" interventions, and so they meet current definitions of intersex in use by UN and other bodies, the statistical analyses by Blackless and Fausto-Sterling have become widely quoted,[33][122] including by clinicians.[123] The following summarizes those frequency statistics:
| Sex Variation | Frequency |
|---|---|
| Not XX, XY, Klinefelter, or Turner | one in 1,666 births |
| Klinefelter syndrome (XXY) | one in 1,000 births |
| Turner syndrome (45,X) | one in 2,710 births[124] |
| 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 | one in 1,000 birth.[125] |
| 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, e.g. 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[126] |
Medical classifications[edit]
Signs[edit]
There are a range of variations between female and male types of genitalia, demonstrated by the Prader scale.[127][128]
Ambiguous genitalia[edit]
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. According to some,[129][130] the distinctions "male pseudohermaphrodite", "female pseudohermaphrodite" and especially "true hermaphrodite"[131] 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.[132]
"True hermaphroditism"[edit]
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.[133] This is an example of mosaicism or chimerism and is quite rare.
Ovotestes[edit]
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."[134]
Intersex activist Cheryl Chase is an example of someone with ovotestes.[135]
"Phall-o-Meter"[edit]
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:[30]
Other signs[edit]
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.
Causes[edit]
Main article: Sexual differentiation
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.[136] 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.[136] 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 MĂ¼llerian duct system develops into the uterus, Fallopian tubes, and inner third of the vagina. In males, the MĂ¼llerian 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.[136] 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[edit]
Further information: Disorders of Sex Development
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.[1] During 2015, the Council of Europe,[33] the European Union Agency for Fundamental Rights[81] and Inter-American Commission on Human Rights[82] have called for a review of medical classifications that unnecessarily medicalize intersex traits[33][81][82]
| 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.[30]
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.
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| 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.[137] |
| XX | Freemartinism | This condition occurs commonly in all species of cattle and affects most females born as a twin to a male. It is rare or unknown in other mammals, including humans. In cattle, the placentae of fraternal twins usually fuse at some time during the pregnancy, and the twins then share their blood supply. If the twins are of different sexes, male hormones produced in the body of the fetal bull find their way into the body of the fetal heifer (female), and masculinize her. Her sexual organs do not develop fully, and her ovaries may even contain testicular tissue. When adult, such a freemartin is very like a normal female in external appearance, but she is infertile, and behaves more like a 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 avagina and no uterus, cervix, or ovaries, and are infertile. The vagina may be shorter than usual, and, in some cases, is nearly absent. Instead of female internal reproductive organs, a person with CAIS has undescended or partially descended testes, of which the person may not even be aware.
In mild and partial androgen insensitivity syndrome (MAIS and PAIS), the body is partially receptive to androgens, so there is virilization to varying degrees. PAIS can result in genital ambiguity, due to limited metabolization of the androgens produced by the testes. Ambiguous genitalia may present as a large clitoris, known as 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.
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| 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.[138] 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 MĂ¼llerian 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 MĂ¼llerian 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) whose gonads don't develop properly. Clinical features are heterogeneous.[30] |
| 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.[30] |
| 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 | Mosaicismand 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.[139]
Mosaicism and chimerism may involve chromosomes other than the sex chromosomes, and not result in intersex traits.
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Medical treatment[edit]
Medical treatments include surgery, use of hormones, and psychosocial support.
Psychosocial support[edit]
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 such as "minimizing family concern and distress" and "mitigating the risks of stigmatization and gender-identity confusion".[96]
In 2012, the Swiss National Advisory Commission on Biomedical Ethics argued strongly in favour of improved psychosocial support, saying:[10]
A joint international statement by intersex community organizations published in 2013 sought, amongst other demands:
Surgery[edit]
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.[96] This is criticised by many human rights institutions, and authors including Morgan Holmes andAlice 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.[140]
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 are not often consulted on the decision-making process when choosing the sex of the child. 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."[119] Opponents maintain that there is no compelling evidence that the presumed social benefits of such "normalizing" surgery outweigh the potential costs.[141][142]
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.[143][144][145][146][147][148][149][150][151][152]
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.[153] 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.[30] Other cases where vaginoplasty has caused complications, is that the implant or artificial vagina will not stay in place, or need further surgeries.[154] 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 surgical 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."[10]
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".[4]
In 2015, an editorial in the British Medical Journal (BMJ) described current surgical interventions as experimental, stating that clinical confidence in constructing "normal" genital anatomies has not been borne out, and that medically credible pathways other than surgery do not yet exist.[155]
Decision-making on cancer risks[edit]
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.[156]
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: "clinical intervention pathways stated to be based on probabilities of cancer risk may be encapsulating treatment decisions based on other factors, such as the desire to conduct normalising surgery… Treating cancer may be regarded as unambiguously therapeutic treatment, while normalising surgery may not. Thus basing a decision on cancer risk might avoid the need for court oversight in a way that a decision based on other factors might not. The committee is disturbed by the possible implications of this..."[9]
Medical photography[edit]
Photographs of intersex children's genitalia are circulated in medical communities for documentary purposes; an example appears on this page. Problems associated with experiences of medical photography of intersex children have been discussed[157] along with their 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[edit]
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]
Genetic selection and terminations[edit]
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, Organisation Intersex International Australia made a submission on genetic selection via Preimplantation genetic diagnosis to the National Health and Medical Research Council recommending that deselection of embryos and foetuses on grounds of intersex status should not be permitted. It quoted research by Professors Morgan Holmes, Jeff Nisker, associate professor Georgiann Davis, and by Jason Behrmann and Vardit Ravitsky.[162] It quotes research showing pregnancy termination rates of up to 88% in 47,XXY even while the World Health Organization describes the trait as "compatible with normal life expectancy", and "often undiagnosed".[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[edit]
The DSM-5 included a change from using Gender Identity Disorder to Gender Dysphoria. This revised code now specifically includes intersex people who do not identify with their sex assigned at birth, using the language of Disorders of Sex Development.[166] This move was criticised by intersex advocacy groups in Australia and New Zealand.[167]
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