Intersex Flag

The joint, cross-party report, “Involuntary or coerced sterilisation of intersex people in Australia”, was published on 25 October 2013. It raises major concerns about medical ethics and the human rights of intersex people in Australia.

Intersex people are born with variations in physical sex characteristics, such as anatomy or chromosomes. Intersex status is not about gender identity or sexual orientation. Intersex people face many of the same issues as LGBT people, and those facing people with disabilities.

The committee acknowledges that surgeries intend to erase intersex traits from individuals – typically in infancy or early childhood – and society, yet the underlying preconceptions are disturbing and stigmatising:

“As OII commented, normalisation surgery is more than physical reconstruction. The surgery is intended to deconstruct an intersex physiology and, in turn, construct an identity that conforms with stereotypical male and female gender categories” (3.109).

“… What little research exists regarding ‘adequate’ or ‘normal’ genitals, particularly for women, raises some disturbing questions …” (3.100).

“Normalising appearance goes hand in hand with the stigmatisation of difference” (3.128).

and no research has been done to evaluate the benefits of alternatives:

…The medical understanding of intersex is so strongly focussed on binary sex and gender … Enormous effort has gone into assigning and ‘normalising’ sex: none has gone into asking whether this is necessary or beneficial. Given the extremely complex and risky medical treatments that are sometimes involved, this appears extremely unfortunate” (6.30)

Morgan Carpenter, OII Australia president, wrote our submissions to the Senate Inquiry and spoke at the hearing on intersex issues on 28 March. He says:

This report represents the first opportunity, after many years of campaigning, to place our most serious human rights concerns before Parliament. Medical interventions on intersex infants, children and adolescents have been taking place in Australia with insufficient medical evidence, and insufficient emphasis placed on the human rights of the child and future adult. Genital surgeries and sterilisations create lifelong patients and there’s significant evidence of trauma.

At a first view, many of the headline conclusions and recommendations are positive – accepting our recommendations on minimising genital surgery, concern over the lack of adequate data, insufficient psychosocial support, and concern that decision making on cancer risk is insufficiently disentangled from wider concerns about a person’s intersex status itself; we also broadly welcome the recommendations relating to the prenatal use of Dexamethasone.

Councillor Tony Briffa JP, a former mayor of Hobsons Bay and OII Australia Vice President, also spoke at the hearing on intersex issues. Tony says:

We welcome the recommendations around non-pathologising terminology, including use of the word “intersex” by governments and other institutions, and “intersex’ or “differences of sex development” in clinical settings.

We welcome the acknowledgement that genetic diversity is not intrinsically problematic. Intersex people make full, active contributions to society.

Genital surgery

We strongly welcome Recommendation 3: that medical treatment needs multidisciplinary teams working “within a human rights framework” to “favour deferral of normalising treatment until the person can give fully informed consent, and seek to minimise surgical intervention on infants undertaken for primarily psychosocial reasons”.

The committee agree with our proposals regarding genital surgery:

“The proposals put forward by Organisation Intersex International have merit, and are consistent with the committee’s conclusions. The committee believes that a protocol covering ‘normalising’ surgery should be developed, and then adhered to in all cases of intersex children. Such a guideline should be consistent with Organisational Intersex International’s recommendations, particularly 4, 5 and 6″ (3.129).

Those recommendations for guiding surgery, accepted by the committee, are (in 3.114):

  1. Medical intervention should not assume crisis in our difference, nor normalisation as a goal.
  2. Medical, and in particular surgical, interventions must have a clear ethical basis, supported by evidence of long term benefit.
  3. Data must be recorded on intersex births, assignments of sex of rearing, and of surgical interventions.
  4. Medical interventions should not be based on psychosocial adjustment or genital appearance.
  5. Medical intervention should be deferred wherever possible until the patient is able to freely give full and informed consent; this is known as “Gillick competence”.
  6. Necessary medical intervention on minors should preserve the potential for different life paths and identities until the patient is old enough to consent.
  7. The framework for medical intervention should not infantilise intersex, failing to recognise that we become adults, or that we have health needs as adults.
  8. The framework for medical intervention must not pathologise intersex through the use of stigmatising language.
  9. Medical protocols must mandate continual dialogue with intersex organisations.

In place of appearance-related genital surgeries on infants, the priority should focus on family support and counselling. No jurisdiction in Australia yet has a policy framework that supports all of these guidelines.

Surgeries that do not meet these conditions must cease.

Sterilisations

We welcome the acknowledgement by the committee that decision making around sterilisations is not value-neutral, and may be influenced not only by cancer risk:

“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” (4.39).

“The committee does not favour the status quo” (4.42).

In our submissions we noted that sterilisations have taken place to reinforce an assigned sex of rearing, something that the committee acknowledged in point 3.109. Morgan says:

The distinction between therapeutic and non-therapeutic treatment has failed many intersex people in Australia. We welcome the recommendation for the proper oversight of individual cases.

Guidelines, advisory committees and community participation

Morgan Carpenter, President of OII Australia, says:

We welcome legal scrutiny that is guided by human rights based frameworks and guidelines, protecting both the rights of the child and the future adult.

It is essential that future court involvement be shaped by human rights considerations, informed by national guidelines, with the participation of the child, family, and support organisations.

Guidelines must ensure the best protection of the rights of the child and future adult. Guidelines and national standards need to be human rights based, not simply medical in character, and they must be shaped with involvement from the community.

The impact on our community organisations is immense. The Committee was impressed with the professionalism of intersex community organisations, but we are still not equal partners – in the policy development process, the review and evaluation of guidance, or even in providing basic support to intersex people and our families.

We remain unfunded. Everything that we do is a measure of our commitment and concern but, still, all the work that we do is in our spare time. This urgently needs to change.

We thank the committee, its staff, and our partners. Morgan Carpenter said:

OII Australia warmly welcomes this crucial report. It addresses the main concerns of the intersex community. We welcome that this is a joint report with cross-party support, and we would like to thank the Committee members and staff for their hard work.

We also give particular thanks to our friends in the Androgen Insensitivity Syndrome Support Group Australia (AISSGA), the National LGBTI Health Alliance, and the other people and organisations who took time to make relevant submissions to the inquiry, or who participated in the hearing on intersex issues.

We look forward to working with clinicians, Commonwealth and State and Territory Health Departments, and the Commonwealth Attorney General’s Department, to improve health outcomes for intersex infants, children, adolescents and adults.

Tony Briffa said:

This has been a huge year for intersex people in Australia, with our inclusion in anti-discrimination legislation, changes to Medicare item numbers to make them gender-neutral, and federal sex and gender recognition guidelines. We thank all the major parties for their support.

Contact information and photos

Morgan Carpenter, President of OII Australia/main NSW contact: 0405 615 942, [email protected]

Councillor Tony Briffa JP, Vice-President of OII Australia/main Victoria contact: 0418 398 906, [email protected]

All recommendations

Recommendation 1

2.20 The committee recommends that governments and other organisations use the term ‘intersex’ and not use the term ‘disorders of sexual development’.

Recommendation 2

2.21 The committee recommends that health professionals and health organisations review their use of the term ‘disorders of sexual development’, seeking to confine it to appropriate clinical contexts, and should use the terms ‘intersex’ or ‘differences of sexual development’ where it is intended to encompass genetic or phenotypic variations that do not necessarily require medical intervention in order to prevent harm to physical health.

Recommendation 3

3.130 The committee recommends that all medical treatment of intersex people take place under guidelines that ensure treatment is managed by multidisciplinary teams within a human rights framework. The guidelines should favour deferral of normalising treatment until the person can give fully informed consent, and seek to minimise surgical intervention on infants undertaken for primarily psychosocial reasons.

Recommendation 4

3.133 The committee recommends that the Commonwealth government provide funding to ensure that multidisciplinary teams are established for intersex medical care that have dedicated coordination, record-keeping and research support capacity, and comprehensive membership from the various medical and non-medical specialisms. All intersex people should have access to a multidisciplinary team.

Recommendation 5

4.43 In light of the complex and contentious nature of the medical treatment of intersex people who are unable to make decisions for their own treatment, the committee recommends that oversight of these decisions is required.

Recommendation 6

5.30 The committee recommends that all proposed intersex medical interventions for children and adults without the capacity to consent require authorisation from a civil and administrative tribunal or the Family Court.

Recommendation 7

5.31 The committee recommends that the Standing Committee on Law and Justice consider the most expedient way to give all civil and administrative tribunals in all States and Territories concurrent jurisdiction with the Family Court to determine authorisation for intersex medical interventions proposed for a child.

Recommendation 8

5.32 The committee recommends that civil and administrative tribunals be adequately funded and resourced to consider every intersex medical intervention proposed for a child.

Recommendation 9

5.38 The committee recommends that the special medical procedures advisory committee draft guidelines for the treatment of common intersex conditions based on medical management, ethical, human rights and legal principles. These guidelines should be reviewed on an annual basis.

Recommendation 10

5.41 The committee recommends that complex intersex medical interventions be referred to the special medical procedures advisory committee for consideration and report to whichever body is considering the case.

Recommendation 11

5.70 The committee recommends that the provision of information about intersex support groups to both parents/families and the patient be a mandatory part of the health care management of intersex cases.

Recommendation 12

5.72 The committee recommends that intersex support groups be core funded to provide support and information to patients, parents, families and health professionals in all intersex cases.

Recommendation 13

6.11 The committee recommends that the Commonwealth Government support the establishment of an intersex patient registry and directly fund research that includes a long-term prospective study of clinical outcomes for intersex patients.

Recommendation 14

6.25 The committee recommends that the Commonwealth government investigate the appropriate regulation of the use of dexamethasone for prenatal treatment of CAH.

Recommendation 15

6.27 The committee recommends that, effective immediately, the administration of dexamethasone for prenatal treatment of CAH only take place as part of research projects that have ethics approval and patient follow-up protocols.

Background information

27 October 2013.

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