Clinicians acknowledge lack of justification for surgeries on intersex infants in Australia

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The Australian Senate is currently conducting an Inquiry into the involuntary or coerced sterilisation of people with disabilities and intersex people. Two recent submissions by the Australasian Paediatric Endocrine Group (APEG) and the Royal Children’s Hospital, Melbourne (RCH) to the Inquiry offer some surprising admissions:

  • medical interventions take place for social rationales, sometimes portrayed as “functional” rationales
  • the recognition that genital “normalising” surgeries on infants, such as clitoral “reduction”, take place without adequate long term follow-up
  • an acknowledgement that surgeries take place without adequate data on outcomes
  • and without adequate data on the timing of surgery.

Social rationales

According to the Victorian Health Department (2013) and a 2006 medical “Consensus statement”, surgeries take place for a variety of reasons, including “family distress”, “cultural disadvantage”, “mitigating the risks of gender identity confusion” and even “reduced opportunities for marriage”.

The Age reports that each year, 10-15 such “genital reconstructions” take place at the Royal Children’s Hospital, Melbourne, often on infants aged under 2. Other institutions around Australia undertake similar surgeries.

In its submission to the Senate committee, APEG state:

Indications for surgery in DSD involve management of high cancer risk in the testes or ovaries, management of dysfunctional urine flow, 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. […]

d. Reconstructive 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.

In our view, the idea that urination while standing is a functional requirement in boys is mistaken: it is a cultural requirement. The psychosocial rationales stated are never applied to trans children. This problematisation of children’s genitalia is abhorrent.

Unclear outcomes

A lack of evidence supporting good surgical outcomes for cosmetic (appearance-related) surgeries:

…we acknowledge that outcomes related to current approaches remain to be established. (RCH, p.7)

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. (APEG p.4)

Inadequate follow-up

A lack of data, long term support and follow-up:

Current international guidelines recommend long-term follow-up of children with DSD who have early surgery. This does not occur in Australia, as there is no co-ordinated registry regarding the management and outcomes for people with DSD. (APEG p.6)

A major concern in medical management, both in Australasia and internationally, is with deficient psychosocial support, particularly as the young person with DSD becomes older. (APEG p2)

…follow-up studies to assess the impact of our current approaches on outcomes in various subgroups of DSDs are required. (RCH, p.7)

Improvements in care for individuals with DSD will not occur without improvements in clinical service provision and research. (APEG p.7)

These are, in our view, structural failings; the issues that we have brought before the Inquiry are not new concerns. They have been in the public domain since at least the mid 1990s.

Lack of consensus on the timing of any surgery

Both submissions acknowledge a lack of adequate data and consensus on the timing of surgery – and even a lack of data on current practices within Australia.

International medical guidelines exist to define the level of genital ambiguity at which surgery is indicated, however the guidelines state that the optimal timing of surgery remains debatable. This is because there is a lack of strong evidence to either support or refute specific recommendations on timing. (APEG p.4)

International guidelines define the degree of virilisation for which surgery may be indicated; however the optimal timing of this surgery is not known [4] . This is because there are no data to support one particular approach (e.g. surgery in early infancy) over another (e.g. surgery in late infancy, mid-childhood, early adolescence or late adolescence). At RCH, surgery is most commonly performed in infancy. (RCH, p.6)

Although some people advocate leaving all genital surgery till later when the person can consent themselves to the procedure, there are no studies to demonstrate a comparison of outcomes with this greater delay[6, 7]. (RCH, p.6)

Finally on timing, there’s no data on actual clinical practice in Australia yet:

We are in the process of performing a study of the recommendations on surgical timing across the clinicians in our organisation. (APEG p.5)

Ethical concerns

The APEG group acknowledges that current medical models contain ethical conflicts:

Unfortunately these [ethical] principles are not always compatible with each other in clinical decision making. (APEG p.5)

Some acknowledgement is given, particularly in the Royal Children’s Hospital submission, of the need for personal choice and autonomy, however, the public statements made recently by a member of the RCH team are considerably at variance with those attitudes – stating with complete certainty that surgical methods are safe and effective, with good outcomes. In The Age on 20 June:

“While we have the data to say they are going to end up identifying as females … and we have evidence that surgical outcomes are good, and sensory outcomes and sexual function are good, where’s the pressure to change the practice?” [Associate Professor Sonia] Grover says.

With this context, parents are unable to give properly informed consent to surgeries on their children.

Mischaracterisation of intersex groups and organisations

The APEG submission claims that we’re simply a group of dissatisfied patients, which is itself shocking, given their lack of follow up data:

Some individuals are unhappy with their childhood treatment and have formed advocacy groups or pursued litigation. Other patients report satisfaction with early surgery. (APEG p.4)

It is pertinent to note here that the AISSGA, which made a submission calling for a moratorium on infant genital surgery, was founded by Professor Garry Warne, one of the four authors of the APEG report (see Transcript, below).

Disordering of intersex people

Both submissions frame the bodies of intersex people as disordered, people with Disorders of Sex Development (“DSDs”). Both submissions acknowledge the stigmatisation of intersex people.

At this point, we are offered no more than claims of expertise – an argument from authority – and assurances that surgical methods have changed, also made without evidence:

As part of our DSD multidisciplinary team we are fortunate to have highly skilled paediatric urologists with extensive experience in this area. (RCH, p.6)

Conclusions

In our submissions we call for an end to appearance-related “normalisation” surgeries on infants and children. We believe that clitoris and phallus appearance and size should be considered irrelevant to our childhoods.

We make a variety of recommendations in favour of fully informed, personal consent, bodily autonomy, and support for community organisations to address structural imbalances.

The conclusions of our fourth submission, a response to the APEG paper, were as follows:

Intersex is becoming an issue of international concern from a human rights perspective, with increasing scrutiny of the role of the medical profession in surgically assigning sex to infants. We believe that surgical intervention, especially for “psychosocial” reasons, associated with stigma and familial or social distress, must be seen in a human rights context.

Clinicians have been aware of the contentious nature of appearance-related infant genital surgeries and hormonal intervention for many years, at least since the 1997 publication of new data on the David Reimer case. There is, in our view, no basis for the continued appearance-related intervention using such thin, inadequate data on outcomes. The persistent lack of data or consistency on surgical timing by clinicians within the Australasian Paediatric Endocrine Group is also a matter of concern. We fear that the continued lack of data represents a lack of will and oversight, rather than a lack of clinical resources.

Lack of data results in lack of support for children, adolescents and adults. Support for the intersex community sector is necessary to overcome structural inequalities and address intersex-specific health goals.

We warmly welcome the rejection, by APEG, of unnecessary gonadectomies in people with CAIS. We believe that it would be consistent with this approach to end appearance-related interventions on intersex infants. Such interventions should be deferred until patients can personally give fully informed consent – our core demand.

It is not clear that parents can give fully informed consent if they are not made fully aware of conflicting evidence regarding outcomes, and particular concern about sexual function and sensation. We agree with the Swiss National Advisory Commission on Biomedical Ethics when it recommends that appearance-related surgery should be deferred until a patient can consent, with criminal sanction.

In practice, parent demand and clinician support means that appearance-related surgery, for social reasons with contentious, limited evidence and no long-term follow-up will continue unless governments intervene.

Conformity with “international medical guidelines” should not be relied upon by the Inquiry as evidence of good medical practice.

We do not support the selective utilisation of international guidelines; we would support the establishment of national guidelines that ensure personal bodily autonomy on appearance-related issues.

In common with disability groups, we do not believe that the court system is well placed to adjudicate in these matters.

Find out more about our submissions and the Inquiry below.

A Senate report on intersex is due around the end of July (update: likely in late September).

Press

Download the Inquiry reports on involuntary or coerced sterilisation

Recent developments

OII Australia submissions

AISSGA and National LGBTI Health Alliance submissions

Clinician submissions

Legal submissions

Documents tabled by OII Australia

More information