New, fourth, submission on involuntary sterilisation

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We have made a fourth submission to the Senate Inquiry on involuntary or coerced sterilisation of people with disabilities, and intersex people, and it has now been published by the Senate.

This submission, as with previous supplementary submissions, presents or analyses new information not available at the time of earlier submissions.

It follows publication of material relevant to the Inquiry by the Australasian Paediatric Endocrine Group, a feature article on intersex in The Age, and intersex inclusion in important new developments in Europe and the US.

An extract from our fourth submission follows.

Contrasting rationales and evidence for surgical and hormonal intervention in Australia

We note from the Australasian Paediatric Endocrine Group (APEG) submission that surgery still takes place in Australia for the following:

a. Surgery for cancer risk…
b. Surgery for dysfunctional urine flow…
c. Surgery for creation of a vagina…

Surgery may be performed to create a vagina where there was none present at birth. This surgery also involves separating the labial/scrotal folds which may be fused together, but no removal of tissue.

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. Surgery for psychosocial indications remains in contention both within Australasia and internationally, particularly for reduction of an enlarged clitoris, as tissue is being removed which the individual may wish was not removed later on.

Recognition of the contentious nature of these surgeries is absent from public statements by Professor Sonia Grover of the Royal Children’s Hospital, Melbourne. Professor Grover is part of the hospital’s specialist team working with intersex patients and families, alongside two of the four authors of the APEG submission, Professor Garry Warne and Dr Jacqueline Hewitt.

On 20 June The Age reported a view – and a direct quote – by Professor Grover demonstrating absolute medical certainty:

The Royal Children’s Hospital Melbourne currently performs one or two gonadectomies a year on infants with undescended testes… The hospital also performs 10 to 15 genital reconstruction operations a year often on girls under the age of two.

Associate Professor Sonia Grover, director of the department of gynaecology at the Royal Children’s Hospital, says studies show girls with CAH would identify as females and want to have periods and sex later in life and that surgery done early produced good results. All infant surgery is conducted with the informed consent of parents.

”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?” Grover says.

In contrast, APEG suggests that there is conflicting evidence on outcomes with “particular concern” around sexual function. The group gives the following recognition of the limited evidence for surgical intervention:

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. Surgical techniques have differed over time, with clitorectomy no longer performed, and clitoral reduction now being favoured by surgeons…. there is a lack of strong evidence to either support or refute specific recommendations on timing.

The profoundly conflicting opinions provided by different members of the same specialist team at the Royal Children’s Hospital are a matter of deep concern to us.

We take the phrasing around “conflicting results” … “with particular concern regarding sexual function and sensation” to confirm what we have seen reported in Schützmann and elsewhere (detailed in our second submission), that such outcomes are poor. With surgical rationales that are intrinsically focused on genital appearance, this is completely unsurprising. Properly informed consent should fully reflect these “conflicting results” and “particular concern”, not an assertion of certainty.

We note that hormonal interventions are also made:

For girls with a specific diagnosis of congenital adrenal hyperplasia there can be spontaneous reduction in the size of the clitoris with adequate hormone replacement therapy

We are concerned at the implications of iatrogenic (medically induced) changes on puberty and future gender identity. We believe that the problematisation of physical sex-related non-conformity is itself the problem.

The APEG concludes:

4. APEG recognises that there are ongoing difficult decisions regarding genital surgery in minors with DSD raised female, specifically regarding reduction in size of the clitoris/phallus i.e., at what degree of ambiguity is surgery indicated and when is the best time to perform such procedures? It will not be possible to legislate on this matter

We don’t believe that the available evidence supports this. Clitoris/phallus size is irrelevant to most people’s childhood, as it should be. Personal autonomy is recognised in legislation on female genital mutilation. We believe it should be recognised here; we believe that it is possible to legislate on this matter.

Given the paucity of evidence, and the limiting, life-changing nature of surgical and hormonal interventions, we submit that they must be discontinued.

In our third submission, we drew the Inquiry’s attention to the foundational study in this area, by Dr John Money, and pointed out that infant genital surgeries have been contentious now for many years. We still lack sound, clear evidence of both necessity and good outcomes, and we lack longitudinal or control studies. Clinical practice is still based on inconsistent assertions of psychosocial risks and benefits, and cancer risk.

Timing of surgery

We welcome the acknowledgement of contention by APEG in relation to infant genital surgery that:

APEG acknowledges the contention in this area, and recommends that until further evidence becomes available, surgery for the purposes of appearance should only occur if consistent with international medical guidelines on severity of disorder, and that in terms of timing, parents should be thoroughly counselled about the options of very early surgery, delay until later in infancy or delay until the child can be involved themselves in the decision to operate. We are in the process of performing a study of the recommendations on surgical timing across the clinicians in our organisation.

We are glad that the Group is finally studying recommendations on surgical timing; the lack of data or consistency on this issue is itself a matter of concern showing a lack of adequate regulation and guidelines. We fear that the continued lack of data represents a lack of will and oversight, rather than a lack of clinical resources.

We contend the value of “international medical guidelines” when those guidelines are the subject of increasing international concern. We note that international best practice, defined in a report of the Swiss National Advisory Commission on Biomedical Ethics, does not support early surgeries.

We note a conflict in expectation between APEG and a parent’s group. APEG recommend:

APEG recommend that treatment be consistent with international practice guidelines as well as ethical principles, with all decisions made with the full informed consent of the parents and the assent of the young person if they are old enough to be able to become involved in decision making.

Yet The Age reports comments by a parent (not a person with CAH, but president of a parent group related to CAH):

Michelle Hoare, president of the Congenital Adrenal Hyperplasia Support Group of Australia, says: “You don’t want your child to look different. That’s one of parents’ main concerns.”

In practice this means that appearance-related surgery, for social reasons with contentious, limited evidence will continue unless governments intervene.

In a closely related issue not addressed by APEG or Professor Grover, Furtado et al found that intersex people were likely to change lived sex in 8.5-40% of cases, depending on diagnosis . This is also the case with CAH (Congenital Adrenal Hyperplasia), which was the subject of Professor Grover’s statements to The Age. These figures are astonishingly high and remain current concerns. Also in The Age:

Andie Hider, vice-president and medical liaison representative for the Androgen Insensitivity Support Group of Australia knows a couple “torn apart by grief because of a wrong decision [about gender] made when the child was young”.

In our view, it is not reasonable to dismiss such cases as a patient identity issue, of gender dysphoria. Poorly evidenced clinical approaches, and disregard for data on changes in lived sex, bear responsibility for surgically assigning an incorrect sex and limiting later life options.

Deferring surgery until such time as a patient can personally give fully informed consent would prevent or substantially reduce the number of incorrect surgical assignments.

We commend the Swiss National Advisory Commission on Biomedical Ethics (tabled to the Senate Inquiry) when it recommends that appearance-related surgery should be deferred until a patient can give such consent, with criminal sanction.

In common with several disability groups who have made submissions to this Inquiry, we do not believe that the court system is well placed to adjudicate in these matters.

Also in this submission

Material on gonadectomies and CAIS, intersex and “DSD”, intersex as an international human rights issue, data and long term follow-up, and conclusions.

Conclusions

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.

Important note

There are a few typographical errors in this hastily written submission, apologies to readers, Most are minor, however, the 8.5-40% figure attributed to Furtado is incorrect. Furtado et al actually say 8.5-20%, but also 63% in 5α-RD2; Hughes, 2006, says up to 60% in virilising 5α-RD2 assigned female at birth, 25% in PAIS, and under 10% in 46,XX CAH. Notification of this erratum has been published by the Senate.

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OII Australia submissions

AISSGA and National LGBTI Health Alliance submissions

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