Over a number of decades, personal autonomy has become a dominant value in Australian medical law, reflecting its moral weight in Australian society more generally.
Legislation and common law principles support patients in their exercise of personal autonomy, while seeking to protect individuals (including children) who are not yet in a position to do so.
Yet the content of personal autonomy, both as a moral value and legal principle, is subtly changing.
The law protects the medical decisions that a patient wants to make. Consider, for example, the liberalisation of abortion law across Australia’s jurisdictions over the past 10-15 years, or the introduction of assisted dying legislation over the past decade, most recently in the ACT. But it also protects the identity a person has – or may aspire to have – when they are older and can make their own decisions.
By definition, the sex characteristics of an intersex person do not fit neatly into the binary world of male and female.
The Darlington Statement (March 2017), a consensus statement by Australian and New Zealand intersex organisations and independent advocates, reflects the growing recognition that decisions about the bodies of intersex people should be made by intersex people themselves, not by parents and medical practitioners when the person is a child.
Against this background, the Variation in Sex Characteristics (Restricted Medical Treatment) Act 2023 (ACT), should not come as a surprise, at least conceptually, despite the substantial cultural impact it may have on medical practice.
Amongst other things, the “Restricted Medical Treatment Act”, an Australian first, prevents treating medical practitioners and parents from quietly agreeing on, and assigning a sex to an intersex child.
Instead, it adopts a precautionary approach – requiring decisions that modify the sex characteristics of an intersex child to be deferred until such time as the child achieves the maturity to make their own decisions.
A brief review of the Variation in Sex Characteristics (Restricted Medical Treatment) Act 2023 (ACT)
Under the Act, a “variation in sex characteristics” means a “congenital condition that involves atypical sex characteristics” (s 7(1)). These include chromosomal, gonadal or anatomical sex characteristics including sex-related hormones, sexual and reproductive parts of the body, and physical features that emerge following puberty.
Certain conditions are excluded from the concept of a “variation in sex characteristics” in the Regulations, including polycystic ovary syndrome, and undescended testes (s 3).
However, the definition would include any of the dozens of conditions affecting intersex people, including children born with both male and female sex organs, or a child born with complete androgen insensitivity, who may develop phenotypically as a woman because they cannot absorb testosterone.
Under the new ACT Act, the concept of “restricted medical treatment” refers to surgical or medical procedures and drug treatment, on a person who has a variation in sex characteristics, that permanently changes their sex characteristics.
It also refers to a prescribed procedure or treatment that temporarily changes a person’s sex characteristics (s 8). Under the Regulations, vaginal dilation has been prescribed (s 4).
The Restricted Medical Treatment Act defines a “prescribed person” as an adult with variations in sex characteristics who is subject to a guardianship order that applies to the medical treatment (in NSW, see Guardianship Act 1987 (NSW) ss 16, 33A(4)(a)).
It also applies to an inter-sex child who does not yet have decision-making ability in relation to their medical treatment (s 9).
The Act provides that restricted medical treatment on a prescribed person can only be undertaken in accordance with an approved treatment plan. The treatment plan may apply either to a class of prescribed people, or to an individual prescribed person (ss 10-11).
The Act establishes the Restricted Medical Treatment Assessment Board (s 29), whose members sit as members of assessment committees that assess applications in relation to treatment plans.
A decision-maker for a prescribed person, and a health practitioner for the prescribed person are among those who can apply to the Assessment Board for approval for a treatment plan (s 11).
The Assessment Board must include a person with relevant medical expertise, as well as a person with lived experience in a variation in sex characteristics (or their carer), as well as a person with experience in provision of psychosocial support, such as a counsellor or clinical psychologist (s 31; Regulations ss 6-8).
Statutory assessment criteria (s 13) determine whether the Assessment Committee can approve a proposed treatment plan.
In order for a treatment plan to be approved by an Assessment Committee, there must be sufficient evidence that the prescribed person or people would suffer:
- “significant physical or psychological harm if the proposed treatment or an alternative treatment option were not undertaken” [that is, the status quo would cause “significant…harm”];
- There must also be sufficient evidence that alternative treatment options have been considered; and that
- the proposed treatment is “no more restrictive of the ability to make a decision about a prescribed person’s sex characteristics in the future than any alternative treatment option” (s 13).
An alternative treatment option includes a delay in treatment or another procedure that is as effective as the proposed treatment.
Through these three statutory criteria, the legislation seeks to adopt a precautionary approach – deferring decisions that modify the sex characteristics of an intersex child until such time as the child achieves the maturity to be capable of making their own decisions.
The Minister is authorised to make guidelines that an Assessment Committee must or may consider when considering a treatment plan for approval (s 17).
Such guidelines are now in force. Amongst other matters, they instruct assessment committees to consider, when considering whether the delay of proposed surgery altering a person’s sex characteristics is “as effective as the proposed treatment” (as required under s 13(2)) to consider “the efficacy of the treatments in mitigating all relevant physical or psychological harm to the prescribed person rather than any specific subset of physical or psychological harms”.
This guideline is highly significant. For example, it would appear to prevent a treating medical practitioner from focusing excessively on a modest cancer risk (see here, and here) that supports the removal of the testes of an intersex child, as distinct from monitoring the child for cancer risk in order to maximise the self-determination and choices of the child later on.
In considering whether the prescribed person would suffer significant harm if the proposed treatment (or an alternative) were not undertaken, the child’s wishes must be considered, if any have been expressed (s 14(a)).
The Assessment Committee must disregard evidence “that the treatment needs to be undertaken to reduce discrimination or stigmatisation or a perceived risk” of such (s 14(b).
In this way, the legislation seeks to ensure that cultural attitudes about intersex people do not compel irreversible procedures to which the child has not consented, and might not ever consent to if such procedures can be safely deferred until the child acquires decision-making ability.
In summary, the Variation in Sex Characteristics (Restricted Medical Treatment) Act 2023 (ACT) challenges assumptions that children with variations in sex characteristics are disfigured or have a “spoiled identity” or have bodily disfigurements that must be “fixed”.
The Act protects the identity of intersex children until such time as they can exercise personal autonomy in relation to their own bodies.
In my view, other Australian legislatures are likely to support the goals of the ACT’s Restricted Medical Treatment Act. It will be wholly unsurprising if similar legislation is introduced into State Parliaments in the near future.
For further discussion, see: here, here, here, and here.
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