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Interview with SIX News Australia: New Bill (ACT) to Protect Intersex Rights

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.

See https://www.cmtedd.act.gov.au/__data/assets/pdf_file/0011/2194616/variation-in-sex-characteristics-restricted-medical-treatment-regulation-2023.pdf

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.

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Two conference papers to wrap up the year

In November I delivered two conference papers. I summarise them below.

From cell transplants to genome edits: Regulation and bioethics of existing and emerging interventions for sickle cell disease

This first paper was a ‘rapid-fire’ talk at the Australian Association of Bioethics and Health Law (AABHL) conference (‘Making Connections’) in Hobart, Tasmania, on 17 November. This talk summarised some of the work I have done on the bioethics of somatic cell genome editing with my colleague Prof Dianne Nicol. The most promising and translation-ready genome editing treatment around today seems to be CTX-001, manufactured by Vertex Pharmaceuticals. CTX-001 has been developed to treat sickle-cell disorders (SCDs).

SCDs comprise a group of genetic disorders of red blood cells (RBCs). Hemoglobin in RBCs usually carries oxygen from the lungs to the tissues and removes carbon dioxide. In the SCDs, a ‘sickle’ hemoglobin (‘HbS’) molecule is expressed within the RBCs. Generally speaking, if you have two HbS genes, you might have sickle-cell anaemia. If you have one HbS gene (heterozygous), you might have beta thalassemia.

The HbS molecule in the RBCs comes from the HbS gene. The HbS gene is a mutation thyat occurs when glutamic acid is replaced by valine. GAG becomes GTG on the HbS gene (at chromosome 11p15.5), which results in the HbS gene. Pathophysiologically, once the HbS gene mutation occurs, the HbS molecule within the RBCs results in a situation where, under reduced oxygen tension, you get polymerisation of the RBC, and this turns the cells (erythrocytes) into the characteristic sickle cell shape. When the RBCs are in this sickle shape, they obstruct blood flow, causing ischemias or vaso-occlusive crises. This then deprives the tissues of oxygen, creating respiratory issues that can be very serious.

CTX-001 is a new treatment to treat and potentially cure SCD. This paper examined SCD and its prevalence, identified its significant impacts on African American and African populations and analysed the bioethics of the best existing treatment (the allogeneic hematopoietic stem cell transplant, or a bone-marrow transplant). The paper then contrasted the bone-marrow transplant with the CTX-001, the yet-to-be-approved somatic cell genome therapy, and briefly noted the bioethical implications of administering CTX-001.

The paper was largely based on a book chapter contribution that I have written with Dianne Nicol titled Bioethical decision-making about somatic cell genome editing; Sickle-cell disease as a case study, which has been accepted by the editors of the Springer Handbook of Bioethical Decisions and will presumably be published in 2023. Slides from my talk (title page below) are viewable here.

Teaching constraints: Why we should (but don’t) teach the Commonwealth ‘spending’ power (among other things)

The second paper was presented at a symposium of law academics from around Australia held at the University of Sydney on 29 and 30 November and called Teaching Material: Symposium On The Pedagogy Of Political Economy In Australian Law Schools (program here).

This paper was one of my first serious attempts as a legal scholar to write about public finance law. In writing the paper, I learnt a lot, including from Will Bateman’s excellent book Public Finance and Parliamentary Constitutionalism (CUP, 2020). The essence of my talk was the ‘spending power,’ which is generally understood to be reposed in section 83 of the Australian Constitution. However, sections 81, 3 and 66 also deal with the Executive Government’s ability to spend by reference to Consolidated Revenue Fund, and so I made reference to those sections as well. But the main claims I was making were as follows.

There is no textbook dealing with public finance law in Australia, or in the UK, Canada or New Zealand; this represents an almost unbelievable lacuna in legal knowledge that shall continue to dog learning and epistemic understanding until we build a textual knowledge base.

There are three examples of how complicated public finance law can be; but, when we look at these examples, we can readily see (1) just how easily these complications can be resolved, and (2) why it is so important to resolve them.

The first complication is the notion of the spending power under s 81 of the Constitution; that power is not generally a parliamentary power but one exercised exclusively by the Executive Government of the Commonwealth; in other words, federal MPs not a part of the Executive are powerless to block spending or ‘block supply,’ with the effect being that there is really nothing anyone can do outside the Executive to control how much, or how little, the Commonwealth spend on its projects

The second complication is that the Consolidated Revenue Fund, which exists by dint of the ‘appropriations power’ (Constitution s 81; but also ss 83, 3, 66) is not actually a finite ‘kitty’ into which taxpayers’ taxes are deposited (eg, by the Australian Taxation Office), as appears to be largely assumed. Rather, the CRF is more complicated. It is a legal concept; and it is notionally self-executing and does not actually appear to be accessible, or its full quantum knowable, at any single point in time. This may be as confusing for students as it has been for apex courts!

The third complication is the seemingly unknown fact that special appropriations and standing appropriations can set aside (‘hypothecate’) or even ‘bake in’ an unspecified amount to be spent on a government program over an unspecified period of time. This means that spending can be effectively automated. For example, Medicare: will a person entitled to a rebate ever have their request declined because there are ‘insufficient funds’ in the CRF? No.

The point of bringing this into relief is to show that, as with legal knowledge about the legal ‘abstraction’ that is the CRF, knowledge about appropriations, and specifically ‘special appropriations’ (including knowledge about the common law and operations of the finance department), shows us: (1) precisely how government can lawfully spend money (for what purposes); (2) how it determined this (and it appears to be self-determined and open-ended (see Brown v West; Combet v Cth); (3) whether an appropriation that is an ‘Advance to the Finance Minister’ (AFM), for example, is lawful (it is: see Wilkie v Cth; Aus Marriage Equality Ltd v Minister for Finance); and (4) whether appropriations can include money that is not government money (seemingly they can, through ‘net appropriation’ agreements determined by the Finance Minister under the Financial Management and Accountability Act 1997 (Cth) s 31).

As the slides reveal, for each of these ‘complications’, there is a respective ‘teachable’ that shows us so much more about the reality of government spending. The paper then goes on to illustrate its claims through an example of a fictitious Act, the Bigger Medicare Act 2022 (Cth). I am hoping to write this up as a paper in the new year, once I finish some other work. The slides (title below) are viewable here.

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Why a modern legal education should examine constraints on the Commonwealth’s spending power

Mainstream critical legal education in Australia gives little attention to enactments and case law regulating the Commonwealth’s constitutional power to appropriate (s 81) and spend money (s 83). This neglect has several causes, including a shallow knowledge base. Few legal scholars have engaged with reforms aimed at increasing the public administration of government spending, much less criticised their effects on Parliament’s spending powers. One exception is Professor Charles Lawson, who argues such reforms have undermined Parliament’s constitutional authority.

The Charter of Budget Honesty Act 1998 (Cth) (CoBHA) is a reform in point. It imposes guiderails around the Commonwealth’s constitutional spending (‘budgeting’) powers by introducing ‘principles of sound fiscal management.’ On first view, these principles seem commendable: they make government more transparent about fiscal strategy and seem broad enough to permit diverse governments to develop divergent economic policies. But the substance of these principles (including what they omit) reflects a bias towards orthodox neoclassical economic theory (eg, pro-austerity fiscal policy) and against the emergent insights of heterodox economic theory (eg, the sectoral balances approach).

Given the central role government expenditure plays in our daily lives (eg, Medicare, the NDIS) and the importance of political economics to Australian electors, a modern legal education should familiarise students with laws that may constrain or even undermine Parliament’s constitutional power to spend money (such as CoBHA), together with related case law. I contend that both constitutional law and administrative law are Priestley 11 subjects well placed to highlight these tensions in political economy and law.