Intersex medical interventions
Intersex topics |
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Intersex medical interventions (IMI), also known as intersex genital mutilations (IGM),
Interventions on intersex infants and children are increasingly recognized as human rights issues. Intersex organizations, and human rights institutions increasingly question the basis and necessity of such interventions.[5][6] In 2011, Christiane Völling won the first successful case brought against a surgeon for non-consensual surgical intervention.[7] In 2015, the Council of Europe recognized, for the first time, a right for intersex persons not to undergo sex-assignment treatment[8] and Malta became the first country to prohibit involuntary or coerced modifications to sex characteristics.[9][10][11]
Purposes of genital reconstructive surgery
The goals of surgery vary with the type of intersex condition but usually include one or more of the following:
Physical health rationales:
- to improve the potential for fertility
- to provide an outlet for menstruation
- to prevent or reduce urinary tract infections or obstruction
- to reduce risk of cancer in gonads with high risk levels
- to close open wounds or exposed internal organs
- to improve urinary or fecal continence.
Psychosocial rationales:
- to alleviate parental distress over the atypical genital appearance.
- to make the appearance more normal for the person's sex of rearing
- to reduce effects of atypical genitalia on psychosexual development and gender identity
- to improve the potential for adult sexual relationships
Both sets of rationales may be the subject of debate, particularly as the consequences of surgical interventions are lifelong and irreversible. Questions regarding physical health include accurately assessing risk levels, necessity and timing. Psychosocial rationales are particularly susceptible to questions of necessity as they reflect parental, social, and cultural concerns. There remains no clinical consensus or clear evidence regarding surgical timing, necessity, type of surgical intervention, degree of difference warranting intervention and evaluation method.[12][13][14] Such surgeries are the subject of significant contention, including community activism,[15] and multiple reports by international human rights[8][16][17][18] and health[2] institutions and national ethics bodies.[5][19]
Types of intervention
Interventions include:
- surgical treatment
- hormone treatment
- genetic selection and terminations
- treatment for gender dysphoria
- psychosocial support
Surgical interventions can broadly be divided into masculinizing surgical procedures intended to make genitalia more like those of typical XY-males, and feminizing surgical procedures intended to make genitalia more like those of typical XX-females. There are multiple techniques or approaches for each procedure. Some of these are needed for variations in degrees of physical difference. Techniques and procedure have evolved over the last 60 years. Some of the different techniques have been devised to reduce complications associated with earlier techniques. There remains a lack of consensus on surgeries, and some clinicians still regard them as experimental.[20]
Some children receive a combination of procedures. For example, a child regarded as a severely undervirilized boy with a
Masculinizing surgical procedures
Orchiopexy and hypospadias repair are the most common types of genital corrective surgery performed in infant boys. In a few parts of the world
Hypospadias repair may be a single-stage procedure if the hypospadias is of the first or second degree (urethral opening on glans or shaft respectively) and the penis is otherwise normal. Surgery for third-degree hypospadias (urethral opening on perineum or in urogenital opening) is more challenging, may be done in stages, and has a significant rate of complications and unsatisfactory outcomes.[25] Potential surgical problems: For severe hypospadias (3rd degree, on perineum) constructing a urethral tube the length of the phallus is not always successful, leaving an opening (a "fistula") proximal to the intended urethral opening. Sometimes a second operation is successful, but some boys and men have been left with chronic problems with fistulas, scarring and contractures that make urination or erections uncomfortable, and loss of sensation. It is increasingly recognized that long-term outcomes are poor.[26][27]
Epispadias repair may involve comprehensive surgical repair of the genito-urinary area, usually during the first seven years of life, including reconstruction of the urethra, closure of the penile shaft and mobilisation of the corpora.
Urogenital closure closure of any midline opening at the base of the penis. In severe undervirilization a boy may have a "pseudovaginal pouch" or a single urogenital opening in the midline of the perineum. Potential surgical problems: The most complicated aspect of closure involves moving the urethra to the phallus if it is not already there (i.e., repairing a perineal hypospadias). Fistulas, scarring, and loss of sensation are the main risks.
Phalloplasty is a general term for any reconstruction of the penis itself, especially for more unusual types of injuries, deformities, or birth defects. The principal difficulty is that erectile tissue is not easily constructed and this limits the surgeon's ability to make more than minor size changes. Construction of a narrow tube lined with mucosa (a urethra) is a similar challenge. Minor revisions of the skin are rarely followed by problems. More complicated reconstruction may result in scarring and contracture, which can distort the shape or curvature of the penis, or interfere with erections or make them painful.
Concealed penis where a normal penis is buried in suprapubic fat. In most cases, when the fat is depressed with the fingers, the penis is seen to be of normal size. This is common in overweight boys before the penile growth of puberty. Surgical techniques have been devised to improve it.[29] The most common problems post-surgery are recurrence with continued weight gain and scarring.
Feminizing surgical procedures
In the last 50 years, the following procedures were most commonly performed to make the genitalia more typically female: virilization due to congenital adrenal hyperplasia; genital variations due, for example, to cloacal exstrophy; genital variations in infants with XY or mixed chromosomes to be raised as girls, such as gonadal dysgenesis, partial and complete androgen insensitivity syndrome, micropenis, cloacal and bladder exstrophy. In the 21st century, feminizing surgery to support reassignment of XY infants with non-ambiguous micropenis has been largely discontinued, and surgical reassignment of XY infants with exstrophy or other significant variations or injuries is diminishing. See history of intersex surgery.
Clitoroplasty, like phalloplasty, is a term that encompasses any surgical reconstruction of the clitoris, such as removal of the corpora. Clitoral recession and reduction can both be referred to as clitoroplasty. Potential surgical problems: Major complications can include scarring, contractures, loss of sensation, loss of capacity for orgasm, and unsatisfactory appearance.
The most challenging surgery with the highest complication rate is construction of an entirely new vagina (a "neovagina"). The most common instance of this is when a child will be assigned and raised as a female despite complete virilization, as with Prader 5 CAH, or (in the past) when a genetic male infant with a severely defective penis was reassigned as a female. One method is to use a segment of colon, which provides a lubricated mucosal surface as a substitute for the vaginal mucosa. Another is to line the new vagina with a skin graft.[35][36][37] Potential surgical problems: Stenosis (narrowing) of the constructed vagina is the most common long-term complication and the chief reason that a revision may be required when a girl is older. When a neovagina is made from a segment of bowel, it tends to leak mucus; when made with a skin graft, lubrication is necessary. Less common complications include fistulas, uncomfortable scarring, and problems with urinary continence.[32][38][39]
Testes in
Potential surgical problems: Surgery for the more severe degrees of cloacal exstrophy is extensive and usually multistage. A variety of potential problems and complications can occur, including need for long-term
Hormone treatment
There is widespread evidence of prenatal testing and hormone treatment to prevent intersex traits.[42][43] 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]".[42]
Genetic selection 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.[44] There is widespread evidence of pregnancy terminations arising from prenatal testing, as well prenatal hormone treatment to prevent intersex traits.[45][46][47][48][49]
In April 2014,
Gender dysphoria
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 and experience clinically significant distress or impairment, using the language of disorders of sex development.[54] This move was criticised by intersex advocacy groups in Australia and New Zealand.[55]
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 such as "minimizing family concern and distress" and "mitigating the risks of stigmatization and gender-identity confusion".[56]
In 2012, the Swiss National Advisory Commission on Biomedical Ethics argued strongly in favour of improved psychosocial support, saying:[5]
The initial aim of counselling and support is therefore to create a protected space for parents and the newborn, so as to facilitate a close bond. In addition, the parents need to be enabled to take the necessary decisions on the child's behalf calmly and after due reflection. In this process, they should not be subjected to time or social pressures. Parents' rapid requests for medical advice or for corrective surgery are often a result of initial feelings of helplessness, which need to be overcome so as to permit carefully considered decision-making.
It is important to bear in mind and also to point out to the parents that a diagnosis does not in itself entail any treatment or other medical measures, but serves initially to provide an overview of the situation and a basis for subsequent decisions, which may also take the form of watchful waiting.
...interventions have lasting effects on the development of identity, fertility, sexual functioning and the parent-child relationship. The parents' decisions should therefore be marked by authenticity, clarity and full awareness, and based on love for the child, so that they can subsequently be openly justified vis-à-vis the child or young adult.
A joint international statement by intersex community organizations published in 2013 sought, amongst other demands:
Recognition that medicalization and stigmatisation of intersex people result in significant trauma and mental health concerns. In view of ensuring the bodily integrity and well-being of intersex people, autonomous non-pathologising psycho-social and peer support be available to intersex people throughout their life (as self-required), as well as to parents and/or care providers.
Outcomes and evidence
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.[57][58][59][60][61][62][63][64][65]
A 2004 paper by Heino Meyer-Bahlburg and others examined outcomes from early surgeries in individuals with XY variations, at one patient centre.[66] The study has been used to support claims that "the majority of women... have clearly favored genital surgery at an earlier age" but the study was criticized by Baratz and Feder in a 2015 paper for neglecting to inform respondents that:
(1) not having surgery at all might be an option; (2) they might have had lower rates of reoperation for stenosis if surgery were performed later, or (3) that significant technical improvements that were expected to improve outcomes had occurred in the 13 or 14 years between when they underwent early childhood surgery and when it might have been deferred until after puberty.[67]
Chicago consensus statement
In 2006, an invited group of clinicians met in Chicago and reviewed clinical evidence and protocols, and adopted a new term for intersex conditions: Disorders of sex development (DSD) in the journal article Consensus Statement on Intersex Disorders and their Management.
It is generally felt that surgery that is carried out for cosmetic reasons in the first year of life relieves parental distress and improves attachment between the child and the parents. The systematic evidence for this belief is lacking. ... information across a range of assessments is insufficient ... outcomes from clitoroplasty identify problems related to decreased sexual sensitivity, loss of clitoral tissue, and cosmetic issues ... Feminising as opposed to masculinising genitoplasty requires less surgery to achieve an acceptable outcome and results in fewer urological difficulties... Long term data on sexual function and quality of life among those assigned female as well as male show great variability. There are no controlled clinical trials of the efficacy of early (less than 12 months of age) versus late surgery (in adolescence and adulthood), or of the efficacy of different techniques"[56]
Changing practices
Data presented in recent years suggests that little has changed in practice.[72] Creighton and others in the UK have found that there have been few audits of the implementation of the 2006 statement, clitoral surgeries on under-14s have increased since 2006, and "recent publications in the medical literature tend to focus on surgical techniques with no reports on patient experiences".[14]
Patient outcomes
A 2014 civil society submission to the World Health Organization cited data from a large German Netzwerk DSD/Intersexualität study:
In a study in Lübeck conducted between 2005 and 2007 ... 81% of 439 individuals had been subjected to surgeries due to their intersex diagnoses. Almost 50% of participants reported psychological problems. Two thirds of the adult participants drew a connection between sexual problems and their history of surgical treatment. Participating children reported significant disturbances, especially within family life and physical well-being – these are areas that the medical and surgical treatment was supposed to stabilize.[15]
A 2016 Australian study of persons born with atypical sex characteristics found that "strong evidence suggesting a pattern of institutionalised shaming and coercive treatment of people". Large majorities of respondents opposed standard clinical protocols.[73]
2016 Global DSD Update
A 2016 follow-up to the 2006 Consensus Statement, termed a Global Disorders of Sex Development Update stated,
There is still no consensual attitude regarding indications, timing, procedure and evaluation of outcome of DSD surgery. The levels of evidence of responses given by the experts are low (B and C), while most are supported by team expertise... Timing, choice of the individual and irreversibility of surgical procedures are sources of concerns. There is no evidence regarding the effect of surgically treated or non-treated DSDs during childhood for the individual, the parents, society or the risk of stigmatization... Physicians working with these families should be aware that the trend in recent years has been for legal and human rights bodies to increasingly emphasize preserving patient autonomy.[12]
A 2016 paper on "Surgery in disorders of sex development (DSD) with a gender issue" repeated many of the same claims, but without reference to human rights norms.[13] A commentary to that article by Alice Dreger and Ellen Feder criticized that omission, stating that issues have barely changed in two decades, with "lack of novel developments", while "lack of evidence appears not to have had much impact on physicians' confidence in a standard of care that has remained largely unchanged."[74] Another 2016 commentary stated that the purpose of the 2006 Consensus Statement was to validate existing practices, "The authoritativeness and "consensus" in the Chicago statement lies not in comprehensive clinician input or meaningful community input, but in its utility to justify any and all forms of clinical intervention."[75]
Controversies and unsettled questions
Management practices for intersex conditions have evolved over the last 60 years. In recent decades surgical practices have become the subject of public and professional controversy, and evidence remains lacking.[12][13]
Comparing early against late surgeries
Argued or putative advantages of infant surgery:
- Tissue is more elastic and heals better according to many surgeons.
- Genital surgery performed before the age of memory is less emotionally traumatic.
- Surgery in infancy avoids asking adolescent to make a decision that is stressful and difficult even for adults.
- Assuming infant surgery is successful, there is no barrier to engaging in normal sexual activities, and less distortion of psychosexualidentity.
Argued or putative advantages of surgery in adolescence or later:
- If outcome is less than satisfactory, early surgery leaves a person wondering if they would have been better off without it.
- Any surgery not absolutely necessary for physical health should be postponed until the person is old enough to give informed consent.
- Genital surgery should be handled differently than other birth defect surgery; this is a type of surgery that parents should not be empowered to make decisions about because they will be under social pressure to make "bad" decisions.
- By mid-adolescence or later, persons may decide that their atypical genitalia do not need to be changed.
- Infant vaginoplasties should not be done because most people who have had them performed report some degree of difficulty with sexual function; even though we have no evidence that adult sexual function will be better if surgery is deferred, the outcomes could not be worse than they currently are after infant surgery.
Others argue that the key questions are not ones of early or late surgery, but questions of consent and autonomy.[75][76]
Parental consent
Parents are frequently considered able to consent to feminizing or masculinizing interventions on their child, and this may be considered standard for the treatment of physical disorders. However this is contested, particularly where interventions seek to address psychosocial concerns. A BMJ editorial in 2015 stated that parents are unduly influenced by medicalized information, may not realize that they are consenting to experimental treatments, and regret may be high.[20] Research has suggested that parents are willing to consent to appearance-altering surgeries even at the cost of later adult sexual sensation.[77] Child rights expert Kirsten Sandberg states that parents have no right to consent to such treatments.[78]
Sensation and sexual function
Reports published in the early 1990s state that 20-50% of surgical cases result in a loss of sexual sensation.[79][80]
A 2007 paper by Yang, Felsen and Poppas provided what the authors believe is the first study of clitoral sensitivity after clitoris reduction surgery, but the research was itself the subject of ethical debate. Postoperative patients aged older than five years were "considered candidates" for clitoral sensitivity testing, and 10 of 51 patients were tested, with 9 undergoing extended vibratory sensory testing. The initial tests were performed on the inner thigh,
Loss of sexual function and sensation remains a concern in a submission by the Australasian Paediatric Endocrine Group to the Australian Senate in 2013.[3] Clinical decision-making has prioritized perceived advantages from infant clitoral reduction surgery over the potential disadvantages of reduced or distorted sexual sensation. Human rights institutions stress the informed consent of the individual concerned.
Decision-making on cancer and other physical risks
In the cases where nonfunctional testes are present, or with partial androgen insensitivity syndrome, there is a risk that these develop cancer. They are removed by
Gender identity issues
Gender identity and sexuality in intersex children have been problematized, and subjective judgements are made about the acceptability of risk of future gender dysphoria.
Human rights institutions question such approaches as being "informed by redundant social constructs around gender and biology".[86]
Stigma and normality
Parents may be advised that without surgery, their child will be stigmatized,[87] but they may make different choices with non-medicalized information.[88] However, there is no evidence that surgeries help children grow up psychologically healthy.[12][89]
Unlike other aesthetic surgical procedures performed on infants, such as corrective surgery for a
Opponents of all "corrective surgery" on atypical sex characteristics suggest to change social opinion regarding the desirability of having genitalia that look more average, rather than perform surgery to try to make them more like those of other people.
Medical photography and display
Photographs of intersex children's genitalia are circulated in medical communities for documentary purposes, and individuals with intersex traits may be subjected to repeated genital examinations and display to medical teams. Problems associated with experiences of medical photography of intersex children have been discussed[91] along with their ethics, control and usage.[92] "The experience of being photographed has exemplified for many people with intersex conditions the powerlessness and humiliation felt during medical investigations and interventions".[92]
Secrecy and information provision
Additionally, parents are not often consulted on the decision-making process when choosing the sex of the child, and they may be advised to conceal information from their 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."[93]
Alternative pathways
In 2015, an editorial in the 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.[20]
Human rights issues
The Council of Europe highlights several areas of concern in relation to intersex surgeries and other medical treatment:
- unnecessary "normalising" treatment of intersex persons, and unnecessary pathologisation of variations in sex characteristics.
- access to justice and reparation for unnecessary medical treatment, as well as inclusion in equal treatment and hate crime law.
- access to information, medical records, peer and other counselling and support.
- respecting self-determination in gender recognition, through expeditious access to official documents.[5][6][8]
The Council of Europe argues that secrecy and shame have perpetuated human rights abuses and a lack of social understanding of the reality of intersex people. It calls for respect for "intersex persons' right not to undergo sex assignment treatment".[8]
Alice Dreger, a US professor of Clinical Medical Humanities and Bioethics, argues that little has changed in actual clinical practice in recent years.[72] Creighton and others in the UK have found that there have been few audits of the implementation of the 2006 statement, clitoral surgeries on under-14s have increased since 2006, and "recent publications in the medical literature tend to focus on surgical techniques with no reports on patient experiences".[14]
Institutions like the Swiss National Advisory Commission on Biomedical Ethics, have all published reports calling for changes to clinical practice.
In 2011, Christiane Völling won the first successful case brought against a surgeon for non-consensual surgical intervention. The Regional Court of Cologne, Germany, awarded her €100,000.[7]
In April 2015, Malta became the first country to recognize a right to bodily integrity and physical autonomy, and outlaw non-consensual modifications to sex characteristics. The Act was widely welcomed by civil society organizations.[9][10][11][97]
In June 2017, Joycelyn Elders, David Satcher, and Richard Carmona, three former Surgeons General of the United States published a paper at the Palm Center,[98][99][100] calling for a rethink of early genital surgeries on children with intersex traits. The statement reflected on the history of such interventions, their rationales and outcomes, stating:
When an individual is born with atypical genitalia that pose no physical risk, treatment should focus not on surgical intervention but on psychosocial and educational support for the family and child. Cosmetic genitoplasty should be deferred until children are old enough to voice their own view about whether to undergo the surgery. Those whose oath or conscience says “do no harm” should heed the simple fact that, to date, research does not support the practice of cosmetic infant genitoplasty.
See also
- History of intersex surgery
- Intersex human rights
- Disorders of sex development
- (DoDI) 6130.03, 2018, section 5, 13f and 14m
Notes
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- ^ a b c d e Council of Europe; Commissioner for Human Rights (April 2015), Human rights and intersex people, Issue Paper, archived from the original on 2016-01-06, retrieved 2018-01-04
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- ^ a b OII Europe (April 1, 2015). "OII-Europe applauds Malta's Gender Identity, Gender Expression and Sex Characteristics Act. This is a landmark case for intersex rights within European law reform". Archived from the original on May 22, 2015. Retrieved 2015-07-03.
- ^ a b "Surgery and Sterilization Scrapped in Malta's Benchmark LGBTI Law". The New York Times. Reuters. 1 April 2015.
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References
- Australian Senate; Community Affairs References Committee (October 2013). Involuntary or coerced sterilisation of intersex people in Australia. Canberra: Community Affairs References Committee. ISBN 9781742299174.
- Consortium on the Management of Disorders of Sex Differentiation. 2006. Clinical Guidelines for the Management of Disorders of Sex Development in Childhood. Rohnert Park: Intersex Society of North America. DSD Guidelines
- Consortium on the Management of Disorders of Sex Differentiation. 2006. Handbook for Parents. Rohnert Park: Intersex Society of North America. DSD Guidelines
- Council of Europe, and Commissioner for Human Rights. "Human Rights and Intersex People, Issue Paper", April 2015.
- "PACE - Doc. 13297 (2013) - Children's right to physical integrity". www.assembly.coe.int. Council of Europe Committee on Social Affairs, Health and Sustainable Development. Retrieved 18 June 2018.
- Elders, M Joycelyn; Satcher, David; Carmona, Richard (June 2017). "Re-Thinking Genital Surgeries on Intersex Infants" (PDF). Palm Center.
- Morgan Holmes (editor) (October 2009). Critical Intersex, Ashgate Publishing.
- Houk C. P.; Hughes I. A.; Ahmed S. F.; Lee P. A. (2006). "Summary of Consensus Statement on Intersex Disorders and Their Management". Pediatrics. 118 (2): 753–57. S2CID 46508895.
- Human Rights Commission of the City and County of San Francisco, and Marcus de María Arana. A Human Rights Investigation Into The Medical "Normalization" Of Intersex People. San Francisco, 2005.
- Katrina Karkazis (2008). Fixing Sex: Intersex, Medical Authority, and Lived Experience.
- Lee, Peter A.; Nordenström, Anna; Houk, Christopher P.; Ahmed, S. Faisal; Auchus, Richard; Baratz, Arlene; Baratz Dalke, Katharine; Liao, Lih-Mei; Lin-Su, Karen; Looijenga, Leendert H.J.; Mazur, Tom; PMID 26820577.
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- Machado P. S.; Costa A. B.; Nardi H. C.; Fontanari A. M. V.; Araujo I. R.; Knauth D. R. (2015). "Follow-up of Psychological Outcomes of Interventions in Patients Diagnosed with Disorders of Sexual Development: A Systematic Review". Journal of Health Psychology. 21 (10): 2195–2206. S2CID 24498085.
- Swiss National Advisory Commission on Biomedical Ethics NEK-CNE (November 2012). On the management of differences of sex development. Ethical issues relating to "intersexuality".Opinion No. 20/2012 (PDF). Berne. Archived from the original (PDF) on 2015-04-23. Retrieved 2015-07-19.
{{cite book}}
: CS1 maint: location missing publisher (link) - ISBN 9789241564984.
- World Health Organization; OHCHR; UN Women; UNAIDS; UNDP; UNFPA; UNICEF (2014). Eliminating forced, coercive and otherwise involuntary sterilization, An interagency statement (PDF). ISBN 978-92-4-150732-5.
- Zillén, Kavot; Garland, Jameson; Slokenberga, Santa; Committee on Bioethics of the Council of Europe (January 2017). The Rights of Children in Biomedicine: Challenges posed by scientific advances and uncertainties. Committee on Bioethics of the Council of Europe.
External links
- Intersex surgeries: is it right to assign sex to a baby? - video on BBC