Submission to the ACT government on prohibiting harmful medical practices

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the shape of ACT, in purple
In January, IHRA made a submission to the ACT government in response to its discussion paper on prohibiting deferrable medical interventions on intersex people. The ACT government states:

The ACT Government is committed to ensuring all Canberrans are treated equally and our laws should reflect these standards. As part of the Capital of Equality First Action Plan 2019-2021, the government is collaborating with intersex people, human rights organisations and healthcare professionals to form a plan on how prohibition of deferrable medical interventions on intersex people could operate in Canberra.

This work is based on recognition of the Darlington Consensus Statement on intersex human rights and exploring how it impacts on the ACT.

Our submission was written by co-executive director and bioethicist Morgan Carpenter, and endorsed by Intersex Peer Support Australia and Intersex Trust of Aotearoa New Zealand. Drafting was a lengthy process of engagement with our partner organisations, providing us with an opportunity to identify and set out in detail a shared vision on what law reform should look like. This work goes to the core of our mission as an organisation. The submission sets out recommendations for a package of legal reforms to protect people from involuntary and unnecessary elective procedures that modify their sex characteristics.

General principles and recommendations

Our submission is grounded in the following principles and papers:

  • The Darlington Statement, a community consensus statement by individuals and organisations in Australia and Aotearoa/New Zealand, including IHRA and many members of our organisation (AIS Support Group Australia et al. 2017).
  • The Yogyakarta Principles plus 10 (Yogyakarta Principles 2017). Co-executive director Morgan Carpenter was a member of the drafting committee and is a signatory of these Principles.
  • Concluding observations to Australia by UN Treaty Bodies.
  • Our submissions to the Australian Human Rights Commission and the Australian Law Reform Commission in 2018, which set out a series of responses to questions of oversight and other matters that are relevant to this discussion paper (Intersex Human Rights Australia 2018b, 2018c); our submission to the Australian Law Reform Commission was developed in consultation with disability law experts and Disabled People’s Organisations Australia, and with thorough consideration of issues affecting transgender persons.

We recommend that a bill start with an expression of goals, values and principles, followed by the means to implement them:

4.1 Principles, norms and oversight

  • Establish in law a human rights principle, through recognition of the right to bodily integrity, and the elimination of harmful practices – we present more detail on principles in response to question 2.
  • Establish a general approach, through a prohibition of invasive or irreversible medical procedures that modify sex characteristics without an individual’s free, prior and informed consent, unless necessary to avoid serious, urgent and irreparable harm; this expression aims to address complexities in the meaning of ‘medical necessity’ and is drawn from the Yogyakarta Principles plus 10.
  • Establish an oversight mechanism or body, identifying its membership and key aspects of how it is to operate, and how it should fulfil the human rights principles established in the bill. This is necessary to ensure transparency and accountability, and ensure the effectiveness of the proposed legislation, given that there are few relevant models of good practice and medical concepts are contested.
  • Establish norms about provision of information to individuals and family members, based on the model provided by an Argentinian bill (Estévez 2020) and the Yogyakarta Principles plus 10 on the right to truth (Yogyakarta Principles 2017). The goal of this is to ensure non-coercive informed consent, and this should include provision of non-medicalised information and peer support (Streuli et al. 2013; Timmermans et al. 2018; Roen and Hegarty 2018).

4.2 Inclusions and exclusions

  • Identify specific types of intervention that are to be prohibited, such as interventions grounded in social and cultural norms and gender stereotypes, or ‘driven by social factors’ (Malta 2018); this might form a schedule to a bill.
  • Identify existing jurisprudence that addresses female genital cutting (FGM), and how it will coexist with the bill.
  • Identify specific types of intervention that are permitted or out of scope, such as ritual or routine male circumcision, providing the government and/or Assembly with an opportunity to amend the legislation to include these within scope.
  • Identify urgent interventions where there is an evidenced high risk of gonadal tumours, or that are necessary to address salt wasting or inability to urinate, or temporarily block puberty; this might form a schedule to a bill.

4.3 Penalties and redress

  • Establish a criminal penalty for breaches of these provisions, as proposed by the Tasmanian Law Reform Institute (Tasmania Law Reform Institute 2020); this is not the subject of the issue paper but is necessary to make any reform effective.
  • Establish a criminal penalty for jurisdiction shopping; this is not the subject of the issue paper but is necessary to make any reform effective, given the role of clinicians in other jurisdictions in treating children in the ACT.
  • These penalties are justified by the harms inherent to harmful practices.
  • Redress for those who have experienced harms in, or commenced in, the ACT (Peck and Feder 2017).

4.4 Support for affirmative healthcare pathways to replace the existing medical model and eliminate gaps in clinical practice

  • Establish a framework for resourced peer support and advocacy (systemic and individual advocacy) by intersex-led organisations including provision of psychological and social work support over the lifespan; this is necessary as a replacement for existing presumptions that surgery ‘fixes’ children with intersex variations.
  • Provide for the collaborative development of standards of care – we discuss this briefly in our response to question 16.
  • Provide for education about the existence of intersex people, with the goal of promoting awareness and reducing the potential for coercion in social and community settings.

We give detail to this proposed framework in our responses to the discussion paper questions, below. IHRA would welcome any opportunity to assist the ACT government further with the development and passage of such a bill.

We recommend that passage of a bill be accompanied by a formal and unambiguous apology for practices that exist to the present time.

Caduceus
We also offered advice and support to numerous other stakeholders who were invited to make submissions on this restricted distribution discussion paper.

In April, the ACT government published a listening report on the 15 responses to the discussion paper, stating:

a prohibition would not be legally radical and would be consistent with orthodox legal thinking about child welfare

We will work to design possible options for implementing a prohibition of deferrable medical interventions

Work continues, in line with standard approaches towards protecting child welfare. Also in April, Equality Australia convened a legal workshop to consider legal issues. IHRA was ably represented by health law expert, law lecturer and IHRA board member Aileen Kennedy.

IHRA warmly congratulates the ACT government for this careful and deliberative approach to law reform.

More information

Download the IHRA submission

ACT government papers