Submission to AHRC Consultation re Medical Interventions on People Born with Variations of Sex Characteristics

This is my personal submission in response to the Australian Human Rights Commission’s July 2018 Consultation Paper ‘Protecting the Human Rights of People Born with Variations in Sex Characteristics in the context of Medical Interventions’.

This issue – involuntary medical interventions, including surgical and hormonal interventions, that alter the sex characteristics of intersex infants and children – is also the sixth post in a series looking at the unfinished business of LGBTI equality in Australia.

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Australian Human Rights Commission

c/- sogii@humanrights.gov.au

Sunday 30 September 2018

 

Submission in response to the Protecting the Human Rights of People Born with Variations in Sex Characteristics in the context of Medical Interventions Consultation Paper

 

Thank you for the opportunity to provide a submission as part of this important consultation process.

 

I do so not as a person with variations in sex characteristics, but as a member of the broader LGBTI community and as an ally of the intersex community.

 

This includes explicitly supporting the goals of intersex people as expressed in the Darlington Statement: Joint consensus statement from the intersex community retreat in Darlington, March 2017.[i]

 

This submission is informed by that document, as well as The Yogyakarta Principles plus 10: Additional principles and state obligations on the application of international human rights law in relation to sexual orientation, gender identity, gender expression and sex characteristics to complement the Yogyakarta Principles.[ii]

 

As someone who is not an intersex person, I do not propose to answer the specific questions set out in the consultation paper. On these, I defer to the lived experience of people with variations in sex characteristics, as well as the expertise of organisations like Intersex Human Rights Australia and AIS Support Group Australia.

 

Instead, I will comment on the overall human rights challenges faced by the intersex community, and the main actions required to address these issues.

 

The biggest challenge is the ongoing practice of deferrable medical interventions, including surgical and hormonal interventions, that alter the sex characteristics of infants and children without personal consent.

 

Indeed, I would classify these acts as one of the two worst human rights abuses currently affecting the Australian LGBTI community (the other being the continuing mistreatment of LGBTI refugees, including their indefinite detention and proposed resettlement in countries that criminalise homosexuality).

 

Consequently, it is very welcome that the Australian Human Rights Commission is providing renewed attention to these human rights abuses through this consultation process.

 

However, this is only necessary because of the five years of inaction, by Commonwealth, state and territory governments, following the release of the seminal October 2013 Report of the Senate Standing Committee on Community Affairs: Involuntary or Coerced Sterilisation of Intersex People in Australia.[iii]

 

Among other recommendations, that Committee recommended 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 3).

 

It is shameful that even this modest recommendation has not been implemented by Australian governments. In the absence of such intervention, the human rights violations of intersex infants have continued unabated. By some estimates, hundreds of these surgeries occur each year.[iv]

 

The time for a primarily guidelines-based approach is now over. What is needed is an explicit legislative prohibition on the performance of unnecessary and involuntary medical interventions (including both surgical and hormonal interventions).

 

This has been recommended by the UN Committee on the Elimination of all forms of Discrimination Against Women, which has stated that Australia should:

 

‘Adopt clear legislative provisions explicitly prohibiting the performance of unnecessary surgical or other medical treatment on intersex children before they reach the legal age of consent’.[v]

 

A similar call features in the Darlington Statement:

 

‘7. We call for the immediate prohibition as a criminal act of deferrable medical interventions, including surgical and hormonal interventions, that alter the sex characteristics of infants and children without personal consent. We call for freely-given and fully informed consent by individuals…’ (emphasis in original).

 

Importantly, these prohibitions must include sanctions for people who are found to breach these laws, including medical professionals.

 

Recommendation 1. Australian governments must introduce legislation to prohibit deferrable medical interventions, including surgical and hormonal interventions, that alter the sex characteristics of infants and children without personal consent, including penalties for breaching such laws.

 

It is important to recognise that this prohibition will not end all medical interventions on intersex children, including those that are considered both necessary and not deferrable. However, determining what falls within this definition is likely to be highly contested.

 

In order to ensure children who have the capacity to provide consent are appropriately informed and therefore in the best position to make such decisions, they must have access not just to medical opinions (which have traditionally favoured interventions) but also to independent counselling and support.

 

This was recommended by the UN Committee on the Elimination of all forms of Discrimination Against Women (that Australia should ‘provide families with intersex children with adequate counselling and support’), as well as in the Darlington Statement (that ‘individuals and families hav[e] mandatory independent access to funded counselling and peer support’).

 

Those last two words – ‘peer support’ – are perhaps the most important. Individuals, and especially intersex children who have the capacity to provide consent, should have access to the advice, information and support of intersex people and intersex-led community organisations.

 

Recommendation 2. Individuals who are asked to provide consent to necessary, non-deferrable medical interventions must have access to counselling and peer support, including from intersex people and intersex-led community organisations.

 

The advice, information and support of intersex people and organisations is also vital to assist parents and guardians who are asked to provide consent for necessary and non-deferrable medical interventions on behalf of children who are not in a position to provide their own consent.

 

In particular, this advice is essential to help prevent them from providing consent on the basis of social or cultural reasons. These rationales can involve a number of elements, including gender stereotypes and social norms.

 

On this point, it should be acknowledged that parents and guardians of intersex infants are likely to be subject to significant pressure from others that their children to conform to societal expectations (that they, and their bodies, are easily classifiable by others as either male or female).

 

This pressure can be, and has been, exploited by clinicians offering medical ‘solutions’ to what is not actually a problem in the first place, but rather simply the natural diversity of sex characteristics.

 

There is no valid social or cultural reason to modify the sex characteristics of children born with these variations, and certainly no social or cultural justification to override those children’s rights to bodily autonomy and physical integrity.

 

As part of their overall prohibition on modifications to the sex characteristics of minors in 2015, Malta explicitly prohibited such modifications due to social and cultural rationales. Given ongoing social and cultural pressures on the parents and guardians of intersex children here, Australian governments should introduce a similar prohibition.

 

Recommendation 3. Australian governments must explicitly prohibit the ability of parents and guardians to provide consent to modifications to the sex characteristics of children born with variations of sex characteristics on the basis of social or cultural rationales.

 

Even with the overall prohibition on deferrable medical interventions, the specific prohibition on parental consent based on social or cultural rationales, and the provision of peer support from intersex people and organisations, there will likely continue to be some medically necessary, non-deferrable, ‘therapeutic’ procedures performed on intersex infants and children into the future.

 

As I am not an expert in this area, I am not in a position to offer an opinion of what might constitute definitions of medical necessity or therapeutic (and alternatively, non-therapeutic) treatments. As a result, I defer to the expertise of organisations like Intersex Human Rights Australia and AIS Support Group Australia on these issues.

 

However, I do wish to make a comment on the process that should be adopted to ensure these procedures are indeed necessary, non-deferrable and therapeutic. I strongly support the creation of a new independent oversight body to review these decisions.

 

This body should not, indeed must not, be comprised solely of clinicians – particularly because it is clinicians who have been, and continue to be, the perpetrators of human rights violations on intersex infants and children. Instead, the body should include human rights experts, child advocates, and intersex-led community organisations as well as clinicians.

 

The role of the independent body would be to ventilate and consider the pros and cons of proposed medical interventions. This must include consideration of the lifelong health, legal, ethical, sexual and human rights implications of such procedures.

 

Consent or authorisation for treatment must be premised on provision of all available medical evidence on necessity, timing and evaluation of outcomes of medical interventions, including noting where there is either no evidence, or no clinical consensus, on outcomes.

 

Recommendation 4. That a new independent oversight body be created to review necessary, non-deferrable, therapeutic medical interventions on children born with variations of sex characteristics, comprising clinicians, human rights experts, child advocates and intersex-led community organisations.

 

The recommendations in this submission envisage a significant increase in the functions and responsibilities of intersex-led community organisations.

 

This includes being able to provide advice, information and support to intersex children, and their families, to inform their decision-making about medical interventions, as well as contributing to the new independent oversight body reviewing the pros and cons of medical interventions (alongside other groups).

 

It should be noted however that intersex-led community organisations, including Intersex Human Rights Australia and AIS Support Group Australia, are primarily run on a volunteer basis, with limited resources, financial or otherwise.

 

Therefore, in order to support them to perform these expanded roles efficiently and effectively, governments at both Commonwealth and state and territory level should provide ongoing funding to intersex community groups.

 

Personally, I believe this funding should go beyond the functions nominated in this submission, to incorporate broader peer support to all intersex people, including older intersex people adversely affected by human rights violations earlier in life.

 

Given the significant human rights challenges still faced by members of the intersex community, this funding should also support systemic policy advocacy by intersex-led community organisations (instead of funding to umbrella LGBTI organisations that may not have the same level of expertise or give the same level of priority to these issues).

 

Recommendation 5. That Commonwealth, state and territory governments provide ongoing funding to intersex-led community organisations, for the purposes of:

  • Peer support of individuals and families to inform decision-making about medical interventions
  • Serving on the new independent oversight body that reviews medical interventions
  • Broader peer support for all members of the intersex community, and
  • Systemic advocacy for all people with variations of sex characteristics.

 

Please do not hesitate to contact me, at the details provided, should you wish to clarify any of the above, or for additional information.

Sincerely,

Alastair Lawrie

 

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Footnotes:

[i] From the Intersex Human Rights Australia website: https://ihra.org.au/darlington-statement/

[ii] As adopted on 10 November 2017, via: https://yogyakartaprinciples.org/principles-en/yp10/

[iii] Available here: https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Involuntary_Sterilisation/Sec_Report/index

[iv] Intersex Human Rights Australia, ‘Submission to the Australian Law Reform Commission on the Review of the Family Law System – Issues Paper’, 7 May 2018.

[v] Committee on the Elimination of all forms of Discrimination against Women, ‘Concluding Observations on the Eighth Periodic Report of Australia’, 20 July 2018.

 

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