Intersex Human Rights Australia

The Australian Senate’s Community Affairs References Committee today published its long anticipated report, “Involuntary or coerced sterilisation of intersex people”.

This is the first federal inquiry or report on intersex issues in Australia, and one of only a few internationally. It was the first and most significant opportunity that we have ever had to raise issues about the health and wellbeing of intersex people in Australia with parliamentarians. OII Australia made numerous submissions to the inquiry, along with the AISSGA, National LGBTI Health Alliance and clinician and other organisations. We are extremely grateful to Senators Rachel Siewert, Claire Moore, Sue Boyce and their colleagues and staff for their work on this report.

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.

It will take us longer to consider the implications for decision making processes, and the construction of decision making guidelines that fully take the work of the Committee into account.

Download the report

Here are some early take home points.

On normalising surgeries

3.45 Evidence before the committee provided some support for the general statement that ‘there is now a slower and more judicious approach to the decision to perform sex-assignment surgery’.56 However, change is uneven, and surgery of this type is still occurring in infancy and childhood…

3.73 Overall, there are very limited studies of the long-term outcomes of surgery, and some of the results should be of serious concern…

3.97 The evidence suggests that a human rights consistent framework for ‘normalising surgery’ where it involves irreversible and invasive procedures must necessarily operate from a presumption in favour of maintaining the status quo for as long as possible except where such a presumption would conflict with the child’s best interests. A model that confers rights on third parties, through substitute decision making, before it guarantees the rights of the child, is likely to be a disproportionate limitation of the child’s right to autonomy/self-determination.

It is not clear what kind of ‘normal’ is the objective of surgery

3.98 One of the difficulties that is seldom discussed is how to establish what constitutes ‘normal’, particularly in relation to what genitals ‘should’ look like. OII expressed concern about ‘the absence of standard objective measures for cosmetic perceptions of “normal” female genitals’. The Androgen Insensitivity Syndrome Support Group Australia held a similar view of current medical practice…

3.99 APEG advised that the idea of ‘adequate’ penis size was crucial in medical decisions around intersex…

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

The Committee received preliminary data on the timing of genital surgery in 46,XX CAH, previously not in the public domain:

3.106 … It highlights a great diversity of opinions amongst doctors, and some extreme geographical variation in medical practice… Those favouring surgery at less than 6 months were all from New Zealand, Queensland or outside the region, while those at the other extreme, recommending no infant surgery in any circumstances, were all from New South Wales. (p.68)

The Committee noted strong arguments for reform of medical practice:

3.109 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…

3.112 The committee notes that the emphasis in recent guidelines on functional outcomes rather than on cosmetic results148 provides the potential for clinical practice to move away from rendering intersexuality invisible…

3.113 The argument that normalising surgery is required to protect the child from discrimination was strongly contested. Rather than altering the child, it was submitted that societal attitudes are in need of reform. OII submitted that the appropriate course of action is to expose discrimination rather than to mask physical difference…

3.126 The evidence received during this inquiry indicates that many … practices (such as concealing diagnoses, or withholding records) are rejected by all those involved in intersex medical treatment. In some other areas, such as intervention based on limited scientific evidence and the emphasis on resolving issues at birth, improvements are still needed to protect intersex people and their rights.

3.127 The lack of evidence to support intersex medical decision-making is a source of concern, and the committee returns to the issue of research in the final chapter.

In our first submission to the Inquiry we made a number of recommendations for medical intervention. These were referenced in the report:

3.114 OII recommended a focus on family counselling rather than surgical options, and supported changes to the basis on which medical management of intersex is approached:

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. (p.70-71)

The Committee concluded that our principles have merit – we warmly welcome the particular support for items 4, 5 and 6:

3.128 Regarding normalising surgery on intersex people, the committee concludes that:

• Normalising appearance goes hand in hand with the stigmatisation of difference. Care needs to be exercised that medical treatment of intersex is not premised on, and contributing to, the stigma and perceived undesirability of people appearing different from one another.
• There is frequent reference to ‘psychosocial’ reasons to conduct normalising surgery. To the extent that this refers to facilitating parental acceptance and bonding, the child’s avoidance of harassment or teasing, and the child’s body self-image, there is great danger of this being a circular argument that avoids the central issues. Those issues include reducing parental anxiety, and ensuring social awareness and acceptance of diversity such as intersex. Surgery is unlikely to be an appropriate response to these kinds of issues.
• Human rights considerations are important in this area, and any decision- making around medical treatment of intersex children must take them into account.
• Irreversible medical treatment, particularly surgery, should only be performed on people who are unable to give consent if there is a health-related need to undertake that surgery, and that need cannot be as effectively met later, when that person can consent to surgery.
• Medical practice has moved, and appears to be continuing to move, in the right direction, by applying increasing caution to normalising treatment of children.
• An evidence base supporting early surgery for some individuals does exist, but it is small, contested, and it is not yet clear what the factors are that determine success (noting also that ‘success’ is itself a contested subject).
• All major care decisions and case management should take place in a multidisciplinary team setting, and surgery should only be undertaken by highly trained specialists with experience in intersex cases.

3.129 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. (p74-75; our emphasis)

It made the following recommendations:

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.

On sterilisations to manage cancer risks

Sterilisations take place due to risk of cancer, but the data on risk is poorly evidenced. We believe sterilisations have been carried out so frequently that they diminish clinicians’ ability to accurately assess risk. We believe that’s partly because they’ve been used to reinforce an assigned sex of rearing.

The Committee noted the lack of distinction in medical literature between actions to manage potential risk for cancer, and actions to manage intersex status itself – particularly proposed sex of rearing:

4.34 The committee concluded that one of the causes of disquiet regarding the management of cancer risk is that some of the published literature does not adequately distinguish between the appropriate clinical course of action regarding an intersex person’s risk of cancer, and the appropriate clinical course of action to manage a person’s intersex condition itself.

4.35 The footnotes to the 2006 table, missing from other later versions, encapsulate this problem. The 2006 table had notes making it clear that the recommended actions did not arise solely from the cancer risk associated with a variety of intersex, but took account of other factors such as the proposed sex of rearing of the child. This clarity was lost once such notes were omitted. By far the most serious omission was in the case of the 2006 Consensus Statement, because of its broad scope and considerable influence… (p.90)

Conclusion
4.39 The committee is aware of a risk, not directly discussed by witnesses to the inquiry, that 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. This kind of encapsulation of factors under a single reason is evident in the published tables discussed in this chapter. This might happen because of the distinction made by Australian courts between ‘therapeutic’ and ‘non-therapeutic’ medical intervention. 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. (pp.91-92)

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.

On intersex community organisations

2.41 The history of the development of advocacy groups by and for intersex people is, in many ways, analogous to that for people with a disability. Both groups have sought to dislodge the primacy of the prevailing medical perspective which perceives them as ‘problems’ to be ‘solved’ by medical professionals using science, rather than as people with the right to control their lives, and choose the services they use.

The Committee commented generously on the professionalism of the organisations that appeared before hearings – and recommended that we receive core funding to provide support and information, and hopefully also further policy development:

5.71 The intersex community has a number of organisations that have assisted the committee through their submissions to this inquiry, and would be well placed to provide the kind of support promoted in the Guidelines. The committee has been impressed with the policy work and professionalism of the organisations that appeared before it. However these organisations are largely volunteer-run and lack the funding and resources to be able to provide the type of services envisaged by the committee.

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. (p.126)

Endorsement of the established rights-based approach

The Committee endorses the federal anti-discrimination law, and recognition that identity and biology both are deserving of protection.

2.23 31 The committee agrees, noting that biology and identity are separate things. Many (possibly most) intersex people identify as male or female. Medical guidelines actively encourage the assignment of a sex (and by implication identity) to intersex children. This reflects an insistence, both within medicine and in broader society, on defining gender in binary terms. The assignment or development of a person’s gender identity does not change their basic biology.

2.24 No matter what an intersex person’s gender identity, they should and do have access to anti-discrimination protection on the basis of that biology. The committee supports the approach taken by the Senate Legal and Constitutional Affairs Committee, endorsed by OII, stating that an intersex person should not have to identify as male or female in order to have protection from sex discrimination. The committee endorses the conclusion of the Senate Legal and Constitutional Affairs Committee inquiry, that for the purposes of preventing discrimination, ‘intersex’ should be defined in biological terms, since identity is not at issue when intersex people encounter discrimination

Conclusions

The conclusions of the Inquiry report are broadly welcome:

6.28 Intersex presents a number of challenges. Best understood is the need, in some cases urgent, for an intersex person to receive medical treatment from birth. Not so well understood, but gaining more attention, is the need for specialised and on-going psychological support and access to counselling for both intersex people and their parents, where appropriate, to assist in addressing issues that arise in the course of growth and development.

6.29 Least well understood is the challenge that intersex variation presents to the rest of society. It is the challenge involved in recognising that genetic diversity is not a problem in itself; that we should not try to ‘normalise’ people who look different, if there is no medical necessity. It is the challenge of understanding that everyone does not have to fit into fixed binary models of sex and gender, and that nature certainly does not do so.

6.30 A key example of our lack of understanding of how to respond to intersex diversity can be seen in the clinical research on sex and gender of intersex people. The medical understanding of intersex is so strongly focussed on binary sex and gender that, even though its subjects have some sort of sex or gender ambiguity, the committee is unaware of any evidence to show that there are poor clinical or social outcomes from not assigning a sex to intersex infants. Why? Because it appears never to have even been considered or researched. 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.

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.

Download the Inquiry reports on involuntary or coerced sterilisation

• Intersex report: Download report on the involuntary or coerced sterilisation of intersex people, 25 October 2013
• People with disabilities report: Download report on the involuntary or coerced sterilisation of people with disabilities, 17 July 2013

Recent developments

• German proposals for a “third gender” on birth certificates miss the mark
• Clinicians acknowledge lack of justification for surgeries on intersex infants in Australia a compilation of quotes from submissions by the Australasian Paediatric Endocrine Group and the Royal Children’s Hospital, 15 July 2013
• Update on Senate Inquiry on involuntary and coerced sterilisation 13 July 2013, including data on Female Genital Mutilation

OII Australia submissions

• About our fifth, concluding, submission to the Inquiry
• Our fifth submission, dated 29 August 2013 (PDF) a concluding submission, taking into account recent developments
• About our fourth submission a response to the submission by the Australasian Paediatric Endocrine Group, and new data from the Council of Europe
• Fourth submission, dated 30 June 2013 (PDF)
• About our third submission focusing on the rationales for involuntary surgery on intersex infants, and comparisons with Female Genital Mutilation; also presenting information on the M.C. legal case in the US and the 2005 City of San Francisco human rights investigation
• Third submission, dated 3 June 2013 (PDF)
• On our second submission which focused on a case detailed by the Chief Justice of the Family Court, but also the new Victorian Health Department report, and the Senate’s report on the Human Rights and Anti-Discrimination Bill
• Second submission, dated 8 March 2013 (PDF)
• About our first submission
• First OII Australia submission, dated 15 February 2013 (PDF)

AISSGA and National LGBTI Health Alliance submissions

• AISSGA submission, dated 12 March 2013 (PDF)
• Third National LGBTI Health Alliance submission, dated 9 July 2013 (PDF)
• Second National LGBTI Health Alliance submission, dated 15 April 2013 (PDF)
• First National LGBTI Health Alliance submission, dated 12 March 2013 (PDF)

Clinician submissions

• Australasian Paediatric Endocrine Group (APEG), dated 27 June 2013 (PDF)
• Royal Children’s Hospital (RCH), dated 10 July 2013 (PDF)

Legal submissions

• Office of the Public Advocate, Victoria, dated 13 September 2013 (PDF)
• Ms Diana Bryant AO, Chief Justice of the Family Court of Australia, first submission dated 22 February 2013 (PDF)
• Ms Diana Bryant AO, Chief Justice of the Family Court of Australia, second submission dated 2 September 2013 (PDF)

Documents tabled by OII Australia

• Swiss National Advisory Commission on Biomedical Ethics, ‘On the management of differences of sex development’ (PDF)
• Anne Tamar-Mattis (Advocates for Informed Choice), ‘Report to the Inter-American Commission on Human Rights: Medical Treatment of People with Intersex Conditions as a Human Rights Violation’ (PDF)
• Victoria, Department of Health, ‘Decision-making principles for the care of infants, children and adolescents with intersex conditions’ (PDF)
• OII Australia, ‘Response to Victorian Health Department framework document’ (PDF)
• National LGBTI Health Alliance policy statement on the Victorian Department of Health approach to intersex young people (PDF)
• City and County of San Francisco, Report of a 2005 Human Rights Investigation into the medical “normalization” of intersex people (PDF)

More information

• All submissions to the Senate Inquiry on involuntary sterilisation
• Terms of reference for the Senate Inquiry
• Transcript of the public oral hearing on intersex issues on 28 March 2013 (HTML and PDF) witnesses represented OII Australia, AISSGA and the National LGBTI Health Alliance
• Article on the public hearing of the Senate Inquiry on involuntary sterilisation
• Opening statement at the Senate hearing on involuntary or coerced sterilisation, 29 March 2013
• Press coverage of the intersex aspects of the Senate Inquiry, by The Age newspaper, 20 June 2013