Clinical opposition to early intersex medical interventions grows

Intersex-led organisations, human rights institutions and many ethicists have long expressed opposition and concern about so-called “normalising” interventions on infants, children and adolescents with intersex variations, designed to make bodies appear more typically female or male. That opposition has occurred because of evidence of harm, their non-urgent cosmetic character, and a lack of evidence of supporting claims of necessity or timing.

Increasingly, clinicians are also expressing opposition. All surgical interventions on infants, children and adolescents that take place for cosmetic or psychosocial rationales, all non-urgent interventions, are contested from within medicine, as well as without. We review this opposition here.
Physicians for Human Rights

Global organisations

Physicians for Human Rights

In October 2017, Physicians for Human Rights, a co-recipient of the Nobel Peace Prize, published a statement opposing non-medically necessary surgeries without consent:

Physicians for Human Rights (PHR) today called for an end to all medically unnecessary surgical procedures that seek to alter gonads, genitals, or internal sex organs of children born with atypical sex characteristics, until the child is old enough to participate meaningfully in decisions about their body and health…

Physicians for Human Rights is deeply alarmed by the fact that children born with atypical sexual characteristics – sometimes referred to as intersex children, or children with intersex variations – are often subjected to irreversible and medically unnecessary surgeries that seek to alter their gonads, genitals, and/or internal sex organs before they are able to provide informed consent. These surgeries, which can result in sterilization and decreased sexual function, among other negative health outcomes, have been highlighted by United Nations human rights and health experts as counter to the absolute prohibition of cruel, inhuman, and degrading treatment, and as compromising the human rights to physical integrity and health. From a medical ethics perspective, carrying out an irreversible and medically unnecessary surgery before a child is old enough to consent violates internationally recognized informed consent requirements, and violates the obligation to do no harm…

World Health Organization

The World Health Organization has so far published mixed messages. GATE has identified medical practices inconsistent with human rights norms in a draft version of the International Classification of Diseases 11 beta, while a WHO report on sexual health, human rights and the law, makes the following statements:

children may be subjected to medically unnecessary, often irreversible, interventions that may have lifelong consequences for their physical and mental health, including irreversible termination of all or some of their reproductive and sexual capacity. Medical procedures may sometimes be justified in cases of conditions that pose a health risk or are considered life-threatening. Such procedures, however, are sometimes proposed on the basis of weak evidence, without discussing and considering alternative solutions…

Human rights bodies and ethical and health professional organizations have recommended that free and informed consent should be ensured in medical interventions for people with intersex conditions, including full information, orally and in writing, on the suggested treatment, its justification and alternatives

United States

Clinical opposition to nonconsensual non-emergency surgeries in the US has rapidly grown in recent years, however, practices vary from hospital to hospital and team to team, with human rights violations still persistent.
AMA (US)
Board of Trustees of the American Medical Association

In 2016, and following a period of study, the Board of Trustees of the American Medical Association published Report 7-I-16, on Resolution 3-A-16, in which it called for recognition of a right to self-determination:

That our American Medical Association support optimal management of DSD through individualized, multidisciplinary care that: (1) seeks to foster the well-being of the child and the adult he or she will become; (2) respects the rights of the patient to participate in decisions and, except when life-threatening circumstances require emergency intervention, defers medical or surgical intervention until the child is able to participate in decision making; and (3) provides psychosocial support to promote patient and family well-being. (New HOD Policy)

Palm Center
Three former US Surgeons General

In June 2017, three former US Surgeons General, M. Joycelyn Elders, David Satcher, and Richard Carmona, published a paper at the Palm Center, calling for a re-think of genital surgeries on intersex infants:

While we do not doubt that doctors who support and perform these surgeries have the best interests of patients and their parents at heart, our review of the available evidence has persuaded us that cosmetic infant genitoplasty is not justified absent a need to ensure physical functioning, and we hope that professionals and parents who face this difficult decision will heed the growing consensus that the practice should stop.

Our view is based on three simple and compelling rationales. First, there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress… Second, while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress… Finally, these surgeries violate an individual’s right to personal autonomy over their own future…

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.

Human Rights Watch and interACT

Human Rights Watch subsequently published two reports in collaboration with interACT. The first, in July 2017 entitled “I want to be like nature made me”, presented a series of findings based on individual, parent and clinician interviews. It found that:

there have been changes in practice in recent years, with many doctors now advising against surgery on infants and young children. But even so, surgery continues to be practiced on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

In its October 2017 report, entitled A Changing Paradigm, Human Rights Watch documented clinician discomfort with current practices. It reports:

A growing number of doctors are opposed to doing unnecessary early surgery under such conditions. Practitioners also increasingly recognize the suffering of intersex patients who underwent the operations without their consent.

However, despite these promising developments in care for intersex people, the field remains fraught with uneven, inadequate, and piecemeal standards of care—and with broad disagreements among practitioners that implicate the human rights of their intersex patients.

[youtube https://www.youtube.com/watch?v=AW871mJHXxk]

Individual practitioners have also published papers opposed to current surgical practices. Recent examples include a paper by Carmack, Notini and Earp recommending that surgery for hypospadias be deferred until an individual can consent:

Patients with hypospadias are typically referred for surgery during infancy or early childhood. Recent evidence, however, indicates that many individuals with hypospadias do not experience the functional or psychosocial difficulties commonly attributed to the condition, and that surgical intervention for hypospadias carries substantial risk of adverse outcomes. In this article, we review published outcomes data and conduct an in-depth analysis of the typical rationales for hypospadias surgery, taking into consideration both the potential benefits and harms of the procedure, as well as the existence of nonsurgical alternatives. We argue, first, that most childhood surgeries for hypospadias are performed for anticipated future problems concerning function and cosmesis, rather than extant physical and/or psychosocial problems that are adversely affecting the child’s well-being. Second, we contend that the surgery can be safely performed after an age of consent without increasing the absolute risk of surgical complications to an ethically meaningful degree. We conclude, therefore, that surgery for hypospadias should be performed only if requested by the affected individual, under conditions of informed consent.

Europe

London, UK

In Europe, there has been longstanding opposition to medical interventions that take place before intersex kids can consent in London. A clinical team including Sarah Creighton and Lih-Mei Liao have published a long series of journal articles in the period since 2000, highlighting problems with early cosmetic interventions and clinical norms. Some examples include:

Creighton, S., & Minto, C. (2001). Managing intersex, Most vaginal surgery in childhood should be deferred. British Medical Journal, 323, 1264–1265.
Crouch, Naomi S., Minto, C. L., Liao, L.-M., Woodhouse, C. R. J., & Creighton, S. M. (2004). Genital sensation after feminizing genitoplasty for congenital adrenal hyperplasia: a pilot study. BJU International, 93, 135–138.
Lloyd, J., Crouch, N. S., Minto, C. L., Liao, L.-M., & Creighton, S. M. (2005). Female genital appearance: “normality” unfolds. BJOG: An International Journal of Obstetrics & Gynaecology, 112(5), 643–646.
Creighton, S. M., Michala, L., Mushtaq, I., & Yaron, M. (2014). Childhood surgery for ambiguous genitalia: glimpses of practice changes or more of the same? Psychology and Sexuality, 5(1), 34–43.
Liao, L.-M., Wood, D., & Creighton, S. M. (2015). Parental choice on normalising cosmetic genital surgery. BMJ, 351, h5124.

The 2015 paper states:

Surgical techniques for childhood conditions can change long before adult outcomes are known, and experts in surgery have so far been unable to reach a consensus about the best operation. Parents may not realise that they are de facto opting for experimental surgery on their children. Furthermore, their emotional states during decision making may not be optimal. Research suggests that medicalised presentations of genital difference have undue influence on parental decisions and that parental regret can be high.

This team were excluded from a global “Intersex Consensus Meeting” in Chicago in 2005 that had 50 clinicians in attendance. The meeting led to a so-called “Consensus statement on management of intersex disorders” in 2006.

Finland and Switzerland

In Finland, paediatric surgeon Mika Venhola of Oulu university hospital, ceased conducting feminising procedures as soon as he was able.

[youtube http://www.youtube.com/watch?v=riNtxjntqZE]

The following text is quoted from this video interview in 2013:

When I was training to become a paediatric surgeon I was taught how to do these, let’s say, corrective, in parentheses, “corrective” cosmetic surgeries, and at that time it was not allowed to criticise your elders, and it was impossible to voice out then my expression or thoughts on this one. But when I was doing my first intersex surgery due to cosmetic reasons I felt it was such a huge human rights violation, and especially the children’s rights violation, that I swore I will never do this when I am independent and can decide for myself. And I have never done it, since then. It kind of struck me so hard that it is not right

In recent years, Mika Venhola has appeared before consultations by the Council of Europe, including in relation to a wide-ranging report on the rights of children, by its Committee on Bioethics, resulting in a later resolution by its Parliamentary Assembly, both in 2017.

Other notable opponents of so-called normalising interventions include Blaise Meyrat, a paediatric surgeon at Lausanne university hospital. In 2013, following a national bioethics report, Meyrat stated:

It’s a pity that, because of a lack of ethical clarity in the medical profession, we have to get legislators involved, but in my opinion it’s the only solution

Australia

As far as we are aware, no clinicians in Australia have yet publicly taken a position against medically non-necessary non-consensual medical interventions on infants, children or adolescents with intersex variations.

Australasian Paediatric Endocrine Group

In 2013, the Australasian Paediatric Endocrine Group advised the Senate that:

Indications for surgery in DSD involve … creation of a vagina, or surgery for the purpose of appearance including reduction of an enlarged clitoris or repair or construction of a urinary outlet to the end of the penis…

The purpose of these procedures is for functional reasons such as to allow a male individual to urinate while standing, and for psychosocial reasons such as to allow the child to develop without the psychosocial stigma or distress which is associated with having genitalia incongruous with the sex of rearing…

There is limited evidence reporting long-term outcomes of early surgical management for reasons of appearance. The few outcome studies reported have conflicting results of good and poor outcomes (cosmetic, sexual, or psychological), with particular concern regarding sexual function and sensation.

Royal Australasian College of Physicians

In 2015, the Royal Australasian College of Physicians, issued a position statement that contained helpful language. However, it describes statements on protections of the right to bodily diversity as the position of third parties, and it makes reference to “psychosocial rationales” and decision-making by multi-disciplinary teams:

International human rights institutions state that medical interventions for cosmetic or psychosocial reasons should not take place until the person concerned can provide free and fully informed consent. This includes surgical and hormonal interventions, and respect for the right of persons with intersex variations not to undergo sex assignment treatment. The Organisation Intersex International Australia has also advocated on these issues.

Individuals with intersex variations require subspecialist care by expert multidisciplinary management teams, with careful consideration of the issues that can be raised in these conditions, including minimising physical and psychosocial risk, preserving potential for fertility, preserving or promoting capacity to have satisfying sexual relations, and leaving options open for the future.

The language on risks, including the use of psychosocial rationales for surgery, comes from an abstract 2010 set of principles by Gillam, Hewitt and Warne, where psychosocial rationales comprise a set of claims including parental distress, and even “reduced opportunities for marriage”. Psychosocial rationales also include unevidenced risk of “gender identity confusion” due to variations of sex characteristics. There is no evidence supporting these rationales, including no evidence supporting the belief that these risks are mitigated through surgery. This is documented in our Shadow Report to the UN Human Rights Committee. Inclusion of these rationales undermines any recognition of a “debate” or attention to the human rights implications of non-consensual non-urgent interventions.

As we document in our Shadow Report, while the Senate found in 2013 that “there is no medical consensus around the conduct of normalising surgery” (para 3.107), including on surgery indications and timing (para 3.106), we were advised by a Territory Chief and Health Minister in 2014 that:

clinicians follow a standard investigation and management practice that is consistent with a national approach from the Australasian Paediatric Endocrine Group and international consensus statements from key disciplines such as paediatric endocrinology, surgery

At the same time, Family Court cases, off-the-record discussions with parents, clinicians and others show that multi-disciplinary teams conduct early non-necessary medical interventions. According to a 2016 case before the Family Court, those interventions “enhanced the appearance” of the genitalia of a 3-year old child. In material to be published in 2018, there is no clear evidence of any reduction in surgery numbers in the period 2002/3 to 2014/5.

Australian Medical Association

In 2017, the Australian Medical Association included intersex persons within a position statement on marriage equality that focused on issues of identification, sexual orientation and gender identity. This aggregation of intersex and LGBT populations appears to be to the detriment of comprehension of the health and human rights issues at stake.

An invitation

The current situation in Australia is one that OII Australia wishes to change. We welcome discussion with Australian clinicians and clinical organisations that can promote recognition of our right to bodily integrity. We warmly invite clinicians to privately contact us.

Citations

Australasian Paediatric Endocrine Group, Hewitt, J., Warne, G., Hofman, P., & Cotterill, A. (2013). Submission of the Australasian Paediatric Endocrine Group to the Senate Inquiry into the Involuntary or Coerced Sterilization of People with Disabilities in Australia: Regarding the Management of Children with Disorders of Sex Development (Submission).

Australian Medical Association. (2017). AMA Position Statement: Marriage Equality.

Board of Trustees, American Medical Association. (2017). Supporting Autonomy for Patients with Differences of Sex Development (DSD) (Resolution 3-A-16). American Medical Association.

Carmack, A., Notini, L., & Earp, B. (2015). Should Surgery for Hypospadias Be Performed Before an Age of Consent? Journal of Sex Research, 53(8), 1047–1058.

Carpenter, M., & Cabral, M. (2017). Submission by GATE to the World Health Organization: Intersex codes in the International Classification of Diseases (ICD) 11 Beta Draft.

Carpenter, M., & Organisation Intersex International Australia. (2017). Shadow Report submission to the Human Rights Committee on the situation of intersex people in Australia (No. INT/CCPR/CSS/AUS/28771).

Council of Europe. (2016, June 1). Bioethics committee discussed the human rights of intersex and transgender children and young people. Retrieved October 28, 2017.

Creighton, S., & Minto, C. (2001). Managing intersex, Most vaginal surgery in childhood should be deferred. British Medical Journal, 323, 1264–1265.

Crouch, Naomi S., Minto, C. L., Liao, L.-M., Woodhouse, C. R. J., & Creighton, S. M. (2004). Genital sensation after feminizing genitoplasty for congenital adrenal hyperplasia: a pilot study. BJU International, 93, 135–138.

Creighton, S. M., Michala, L., Mushtaq, I., & Yaron, M. (2014). Childhood surgery for ambiguous genitalia: glimpses of practice changes or more of the same? Psychology and Sexuality, 5(1), 34–43.

Eichenberger, I. (2013, January 23). Third gender fights for recognition. SWI Swissinfo.ch. Retrieved October 28, 2017.

Elders, M. J., Satcher, D., & Carmona, R. (2017). Re-Thinking Genital Surgeries on Intersex Infants. Palm Center.

Gillam, L. H., Hewitt, J. K., & Warne, G. L. (2010). Ethical Principles for the Management of Infants with Disorders of Sex Development. Hormone Research in Paediatrics, 74(6), 412–418.

Hughes, I., & Lee, P. (2005, October). Intersex Consensus Meeting.

Hughes, I. A., Houk, C., Ahmed, S. F., Lee, P. A., & LWPES/ESPE Consensus Group. (2006). Consensus statement on management of intersex disorders. Archives of Disease in Childhood, 91, 554–563.

Human Rights Watch. (2017). “I Want to Be Like Nature Made Me.” New York: Human Rights Watch.

Human Rights Watch. (2017). A Changing Paradigm. New York: Human Rights Watch.

Liao, L.-M., Wood, D., & Creighton, S. M. (2015). Parental choice on normalising cosmetic genital surgery. BMJ, 351, h5124

Lloyd, J., Crouch, N. S., Minto, C. L., Liao, L.-M., & Creighton, S. M. (2005). Female genital appearance: “normality” unfolds. BJOG: An International Journal of Obstetrics & Gynaecology, 112(5), 643–646.

National Advisory Commission on Biomedical Ethics NEK-CNE, & Switzerland. (2012). On the management of differences of sex development. Ethical issues relating to “intersexuality”. Opinion No. 20/2012. Berne.

Parliamentary Assembly, & Council of Europe. (2017). Promoting the human rights of and eliminating discrimination against intersex people (No. 14404). Retrieved October 13, 2017.

Physicians for Human Rights. (2017, October 20). Unnecessary Surgery on Intersex Children Must Stop.

Royal Australasian College of Physicians. (2015, November). Sexual and Reproductive Health Care for Young People Position Statement.

Senate, Community Affairs References Committee. (2013). Involuntary or coerced sterilisation of intersex people in Australia. Canberra: Community Affairs References Committee.

World Health Organization. (2015). Sexual health, human rights and the law. Geneva: World Health Organization.

Zillén, K., Garland, J., & Slokenberga, S. (2017). The Rights of Children in Biomedicine: Challenges posed by scientific advances and uncertainties. Committee on Bioethics of the Council of Europe.