Recently, I was interviewed by the young journalistic team at SIX News Australia about a Bill that the ACT Government introduced into its single-house Parliament in late March 2023. As I see it, the proposed Bill, if passed, will be transformative. And in a good way.
It will require interventions that are to be administered to people with variations in sex characteristics that are not medically necessary or urgent to be approved by a committee. The committee will receive applications from medical practitioners proposing a treatment plan. Medically necessary or urgent treatments will be those that are life-threatening, will cause serious damage to health, or will cause or permit significant pain. All others will be deferrable and, if they are to go ahead, will be subject to the requirement of committee approval. To be precise, the Bill’s Dictionary (pursuant to s 3) defines ‘urgent medical treatment’ along these lines:
What this effectively means is that medical practitioners will continue to be allowed to administer urgent restricted medical treatments (as defined above). Nothing will constrain them in this respect. However, medical practitioners will, if the Bill passes, be stopped, or paused, from administering non-urgent treatments to those with intersex conditions.
At the moment, medical practitioners are basically permitted to describe something as ‘in the best interests’ of a patient (be that patient an intersex child or intersex adult) when they propose a treatment to them or their guardian(s). Doctors will generally use their clinical judgment and experience to decide if something is appropriate (where it is not necessary, that is). Sometimes, the practitioner may not even tell the patient (or the parents) the full story if they believe that withholding certain details may prevent the patient from experiencing harm. This is known as therapeutic privilege — a term of law and a defence to medical negligence.
Having obtained consent for a proposed treatment, a practitioner will forge ahead, even if the treatment is not medically necessary. But, if this Bill passes, this rather unregulated practice — the traditional consultative moment — will stop for non-urgent/non-necessary intersex medical decisions. Practitioners faced with a patient who has a variation in sex characteristics which it is not medically necessary to treat will need to propose any treatment they believe should be administered to a committee for approval.
Questions as to whether a treatment is in the best interests of the patient will often involve considerations about whether the patient will be subject to social stigma, prejudice, disadvantage, feelings of self-doubt, and so on. At the moment, those questions are dealt with in all kinds of settings, including many in which decision-makers will be completely uninformed of expertise or specialist knowledge about intersex variations. Specialist knowledges may come not just from physicians, but also psychologists, psychiatrists, endocrinologists, and even those who are involved in human rights.
After all, what are the human rights of a person with a variation in sex characteristics? Such questions, at the moment, will very likely go unaddressed — and probably completely unthought — because there is no mechanism to trigger them. Parents of newborns with variations in sex characteristics turn to their doctor for advice. That’s understandable. But is there uniform expertise among practitioners when it comes to differences in sexual characteristics? To what extent do biases and presuppositions about what is possible or preferable colour the thinking about a proposed treatment?
As I note in the interview, the data is effectively zero. At the moment, the number of treatments, what they are for, and what they are, goes unreported. In the academic context, Morgan Carpenter has prepared a paper that pieces together data from different sources. But the clinical record is not standardised. A lot of data seems to come from patients who are dissatisfied with the decision-making process. This Bill will make all treatments, medically urgent and otherwise, reportable. The data will be deidentified, but it will be collected. Which is a considerable enhancement on current data. As such, this committee model will go a long way in changing the way in which medical decisions are made for and by people with variations in sex characteristics.
One thing of note is that the Exposure Draft of the regulations is also published. The Regulations contain some 32 conditions that would be included as defined variations in sex characteristics.
But the regulation also excludes some conditions, including, for instance, polycystic ovarian syndrome. These nosological or nosographic distinctions and inclusions/exclusions are always a point of contention, and it appears that was the case in respect of this Bill too. Morgan Carpenter of Intersex Human Rights Australia, for instance, notes the following:
We won the argument that legislation needed to be accompanied by significant penalties, and we will be watching to make sure there are no loopholes allowing clinicians or parents to sidestep these.
But we lost the argument that protections should be available for everyone. This resulted in the government conducting a diagnosis-by-diagnosis analysis to determine inclusion or exclusion from protections. And this means that we expect most forms of hypospadias and all cases of bladder exstrophy to be formally excluded. These exclusions are listed in regulation, which is easier to change (and this impacts traits that might in future be excluded also). We understand the pressures that the government has faced in developing this bill, but we also find this narrow scope of protections distressing, as it means that some children who need protecting will not be protected.
A the above indicates, some conditions will not be subject to the regime, which may mean that some people born with, eg, hypospadias, will not have the benefit of the committee approval model. Doctors will be entitled to propose treatments and receive consent in accordance with the traditional model. As the above suggests, however, the regulations could be changed without any new law needing to be voted on or approved by the ACT Parliament.
I hope to continue studying the Bill and its regulations as it evolves and makes its way through the Parliament in the ACT. Hopefully I will find time to write something on it in the next few weeks. For the moment, please watch the interview; and I thank 6 News for having me — particularly Stuart Jeffery and colleagues, who run the law and government program on this emerging network — a program known as ‘Between Parkes Place and Capital Hill.’ The show was previously a podcast but is now included in the SIX News Australia YouTube channel.