I rise today to speak on the Health Safeguards for People Born with Variations in Sex Characteristics Bill 2025. I would firstly like to acknowledge the community who have contributed strongly and advocated for changes in regard to supportive legislation to recognise that this is not only a complex area but also a very small number of people who are impacted by this. There are decisions that have been made in the past with good intent, for the most part – I would like to think that there is no malicious intent in the medical fraternity – but as we move forward we can understand more about the impacts of clinical decisions, surgical decisions and decisions which can have lifelong implications for individuals who have medical procedures undertaken upon their body when they not able to provide a voice to that. That is of course for newborns and children who have had surgical procedures undertaken which have had a lifelong impact on their mental health, on their identity and relationship with their body, and in some instances bodily functions as well – sexual function. They have had an enormous impact. I do thank those and their family members who have had the courage to advocate for changes in this area.
We have learned a lot over time, but we can always do better. Certain aspects and the intent of this legislation have a very, very good purpose. Again, I just thank people for speaking out, because it is not always a comfortable discussion. It is still taboo to talk about sexual function or genitalia. Sometimes it is something that is not disclosed when there are medical procedures or surgical procedures provided to or conducted on children or newborn babies. It is something that is uncomfortable in everyday conversation, but it should not be. For somebody who has come from a medical background, we need to be able to have these discussions in an open way. We need to be able to have these discussions in a non-judgmental way, because only through doing that can we ensure that we have better outcomes for every individual into the future.
There are a number of implications in this legislation, and from the outset I would like to outline that we will be circulating some amendments. These amendments are reflective of the consultation and feedback we have had from the community. It is from the medical community, it is from people who have gone through this journey in the past and it is feedback from particularly clinicians with expertise in this area. They are put forward in good faith because we want to ensure that, if there are going to be health safeguards, they are truly reflective of the needs of the community and do not have unintended consequences that would actually restrict or reduce the ability for individuals in Victoria to access the clinical care that they require.
I would like to first, though, go through the key aspects of this legislation as an overview, and then I will go through the rationale behind the amendments that we intend to put forward in this place, understanding that it is unlikely that they will pass this place. I will flag that these are amendments that will also be taken through the Legislative Council. Our intention is that while we should never presume, it is my understanding we will not have the opportunity to take this legislation through consideration in detail and therefore be able to actually take a vote on the specific four amendments that we are seeking to put forward. However, in light of that, we will put forward a reasoned amendment to allow this to occur.
That is the construct and the overview of our position on this, but it is very much with an outcome in mind and that we need to get this right. We need to ensure that the concerns that have been raised do not have unintended consequences and have a greater impact on children who are born with variations in sex characteristics today. It is something that, fortunately, members within both chambers and of course on both sides of the benches in Parliament have some experience with. It is a very complex area to talk about, how you establish a framework when medical decisions are being made, because research changes rapidly, treatment options change rapidly, and of course you are dealing with humans at the end of the day. While there is consistency in some particularly genetic abnormalities and how they present in individuals, humans are human, and we are all different in our own unique way. So what the medical fraternity understands to be something that is an appropriate treatment today may not apply to two different individuals presenting with the same condition – there may be a more appropriate treatment option. It is not black and white, which is why we do not always have positive outcomes. But if we can have frameworks in place – and this is something that the medical fraternity do exceptionally well, creating clinical pathways, treatment pathways to ensure there is consistency and less likelihood of inappropriate treatment being applied to individuals. This is beyond just variations in sex characteristics; this is for all clinical conditions and how they present.
I commend and would like to also thank the incredible clinicians who are involved in these decisions and treatments. It is not an easy area to work within; it is not something that is taken lightly. I think there is generally a gentle touch in how people intend to go about this. For treatment, for the most part and beyond, in dealing with individuals who present with variations in sex characteristics, the intent always should be to do no harm. That is something that is the driving force behind the medical professionals I have worked with and engaged with in the past: to do no harm. But that does not mean that unintended harm does not take place. Absolutely we support that the frameworks are put in place. We support these through legislation but, more importantly, organically, in terms of how medical practice works in Victoria and across Australia. It works and it improves every single year, because we have got amazing specialists in this state, and the medical fraternity, the healthcare fraternity, should be commended for their work in this space.
There has been very strong advocacy from the variation in sex characteristics community, sometimes known as the intersex community, for many years to legislate these changes. In 2021 the government committed to implementing the (i) Am Equal: Future Directions for Victoria’s Intersex Community report, including oversight for non-urgent medical treatment. There was some commentary in the chamber earlier this week about the term ‘intersex’. It is something that was picked up in the minister’s second-reading speech. It is not intended to cause any offence to refer to intersex. It is for convenience of debate, and I apologise if that is inappropriate or anyone is offended by that. I have been considering how clinical decisions can sometimes translate very poorly into characterisation of individuals. Through the briefings that we have had, the things that we speak about and how this is talked about in medical terms, the term ‘defect’ is sometimes used, ‘genetic defect’. Those sorts of terms are used in a way that is very clinical, and I do want to make it very, very clear that that does not define an individual, that they are defective. It is clinical terminology that sometimes does not translate well. We see that in many aspects, but I think particularly in this debate I want to make it very, very clear that no offence was intended and that translation should not be deemed as an implication on individuals at all.
Other jurisdictions have brought in similar legislation to what it is before this chamber today, including the ACT and internationally in Germany, Spain, Portugal, Iceland and Malta. We do note that the ACT enacted similar legislation to what is before us back in 2023. The Victorian model expands on what is in place in the ACT, but there is much more detail in the oversight framework. There are more detailed consent and capacity requirements outlined in this legislation, and there are more onerous reporting obligations and stronger enforcement and review mechanisms within the Victorian legislation.
To go back a step, people with innate variations in sex characteristics, also referred to as intersex, do not fit the typical definitions of male or female bodies. Now, this is something that is true, but perhaps it defers into something else from what is normal anyway. It is something that comes from a place of clinical decision and clinical terminology. We know that there are more than 40 different variations which can occur in genitalia, reproductive organs, chromosomes, hormone levels or the body’s response to hormones, which can be indicated later in life and be identified late in life as children enter into puberty. Intersex traits are natural biological variations, which occur in about 1.7 per cent of births, affecting up to 1500 babies born in Victoria each year. Not all variations are identified at birth. They are sometimes identified later on, and perhaps even into adulthood during fertility testing. The vast majority of these variations are relatively minor conditions and do not require immediate treatment, while some require urgent treatment to avoid life-threatening complications. This bill is intended to provide greater clarity for practitioners and parents regarding the resolution of those common issues.
Some cases involve more uncommon variations that require a specific treatment plan. In Victoria, this involves around 60 to 120 cases per year. While medical intervention is indicated for some intersex variations, some intersex people have experienced lifelong physical and psychological consequences from deferrable medical interventions performed when they were infants or children. These consequences may relate to issues such as fertility, poor sexual health, urinary issues or the need for further treatments or surgeries. I think this is where it really hits home for each individual and becomes relatable. In some instances, people have found out that they had treatment and medical intervention as a young child, as a newborn, only when they found out that they were infertile because they had had organs removed at that time. The implications on the mental health of those individuals cannot be overstated. It is profound. It is a sense of identity – your ability to have children, your relationship with your sexuality and your genitalia and all that follows on from that. What we are speaking about is not just around the physiological, it is also about the psychological, and I do not think that can be overstated.
This bill seeks to address the need for prevention of harm from such medical procedures. Treatment will not be able to proceed for cosmetic purposes or to normalise the body, whatever that means, before a person is able to consent. There are four main ways that the government is seeking to establish this framework to better protect against cosmetic or premature interventions without the consent of the individual who will be impacted by the treatment. The main purpose of the bill is to establish a legal framework, including safeguards and oversight, to support people born with variations in sex characteristics and their parents in making decisions about medical treatment involving permanent or significant changes, particularly when they are unable to give informed consent.
It also seeks to strengthen the process for obtaining informed consent. It ensures decisions regarding certain medical treatments are deferred until a person has capacity to give informed consent, or, if that is not possible, that there is independent oversight.
I would like to pull out some key areas of this legislation just to ensure that I cover everything within the time allocated, particularly around some of the concerns that have been raised. The Australia and New Zealand Society for Paediatric Endocrinology and Diabetes have provided correspondence that they have written to the Minister for Health, and they have also included the Shadow Minister for Health in regard to this legislation. They raised key concerns around the clinical and practical application of the definition for innate variations in sex characteristics; the proposed processes for determining informed consent and adequate engagement and understanding for those without the explicit legal right to provide consent on their own behalf, such as in paediatric patients; the inclusion of criminal penalties for the provision of clinical care, particularly if the definition or scope of innate variations in sex characteristics remains unclear, and its potential impact on access to medical care for individuals and on clinicians’ capacity and willingness to provide medical care; and on the funding and infrastructure required for implementation, including the requirement for additional dedicated clinical time and supports, psychosocial support services, expansion of multidisciplinary teams and prospective clinical data collection to facilitate assessment of outcomes. The Canberra Hospital has required a dedicated clinician solely to prepare general treatment plans, with only two plans submitted over a 12-month period due to the complexity of the process. Given Victoria’s significantly larger population and potentially greater complexity of cases, substantial additional resourcing will be essential to ensure that patient care and safety are not compromised and the composition and expertise of the proposed independent oversight panel and the governance structures for the proposed oversight panel, including timelines for feedback and mechanisms for high-priority cases.
What is most concerning to me is that the leading body for paediatric endocrinology, which of course would be one of the peak bodies whose members are managing these cases currently, provided this correspondence after this legislation was first tabled in this place, indicating that they did not feel they had been able to provide sufficient input and had not been effectively consulted as part of the formation of this legislation. I understand that they provided input to the (i) Am Equal paper. However, the views that they shared and the evidence they provided as part of that were not included in the final reporting, and so they have concerns. These concerns are also echoed by the AMA. The key concern from the AMA is in relation to the impact of criminalising certain medical procedures, particularly within an area of specialty where there are so few clinicians already. We do not want to have the unintended consequence that the threat of having to go to jail means that you choose a separate specialty or choose, as an endocrinologist, not to work with a certain cohort of young patients who present with variations in sex characteristics.
There are already mechanisms in place to deal with clinicians who do the wrong thing, whether or not it is through the Australian Health Practitioner Regulation Agency, who may deregister a specialist or apply conditions to their registration. These are already in place. It is highly unusual for a medical professional to be threatened with jail for not following a structure when the intent is believed, for the most part, to be around getting the right outcome. When it is not, AHPRA should be able to show their teeth and ensure that those medical professionals do not practise. That is certainly what they are enabled and empowered to do and should be doing. So there is a concern around the criminalisation of the failure to follow treatment plans, act outside them or act before a treatment plan is approved.
It seems like it is a very straightforward process on paper: you go through a process where there is a creation of a treatment plan informed by a specialist and that this will be available within the necessary timeframe so a clinician can take action one way or another, of course with consent obtained through that process. However, these things take time, as we have seen with the ACT example. Sometimes that time is not always available. Sometimes that can hold up or delay procedures being enacted. Sometimes it can be used to deliberately prolong or delay treatment from taking place. I put on the record the views of the medical fraternity, whether it is a paediatric endocrinologist or whether it is the AMA, who represent many other medical professions, putting forward their views and their strong concerns around that aspect.
We have also received a lot of correspondence from Dr Neil Price, who is a paediatric urologist. He is somebody who has extensive experience in treating children with urogenital anomalies. He acknowledges that there is significant stigma, secrecy and inappropriate medical responses experienced by people with variations in sex characteristics, and he strongly supports improved protections in care. That is something that is echoed by the medical fraternity. There is nobody that does not want to see better protections in place for people who are born with variations in sex characteristics. Dr Price, however, argues that this current bill is poorly drafted, overly broad and is likely to cause significant unintended harm. This is something that we should be responding to, and we should try to ensure that the legislation that passes, which is required, does not have unintended consequences and cause unintended harm to Victorians. Similar concerns were expressed particularly by the AMA in regard to the likely reduction of access to specialist care in regard to the criminal sanctions and unclear rules, which will drive experienced clinicians away from variations in sex characteristics care. Parents may lose trust and clarity around their legal authority, increasing stigma and confusion, which is absolutely not what the intent is of the legislation, and I respect that, but we need to make sure we get it right.
There has been concern raised around the proposed decision-making panel that it does not have sufficient medical expertise to be making medical decisions and may delay timely treatment. Specifically, while an individual with lived experience is mandated to be on the panel – and I support that – it does not mandate the inclusion of key clinical expertise or specialities, including endocrinology, paediatric and adolescent urology, paediatric and adolescent gynaecology, and paediatric and adolescent psychology. These are people who should be in the room making the decisions and creating the treatment plans. Given the unique cohort of presentations of VSC, or variations of sex characteristics, that we are speaking about, they are the people who are the experts in the area. They should be in the room, and that should not be something called in or out. Just make sure that they are there, making the decisions at the time.
I will move on to our amendments to ensure that they are circulated, because it is important that the intent of the amendments that we are putting forward is clear. This would ordinarily perhaps be something we could debate in this place as part of consideration in detail; however, this will not occur today. But they are amendments that we will take forward in the upper house, as I have stated. Under standing orders, I wish to advise the house of amendments to this bill and request they be circulated. For clarity, these are the amendments as opposed to the reasoned amendment.
The intent of the amendments put forward is very much reflective of the feedback that we have received in relation to people with lived experience of this and their families and carers, from the medical fraternity who have expertise in this specific area and from the legal fraternity, and they are designed around that.
It is intended to reduce the opportunity for unintended harm. Broadly, the amendments that have been circulated remove the criminal offence for noncompliance with the legislation, which is related to clause 7 on point 4 of the amendments that have been circulated. It will broaden the assessment panel so that it must include the speciality paediatric areas of endocrinology, urology, gynaecology and psychology. This is in relation to clause 19, or points 7 and 8 on the amendments that have been circulated. It includes the applicant’s parental involvement on the assessment panel in relation to clauses 34 and 37. Fourthly, we will bring forward the review of the legislation to three years after the commencement rather than five years, which is within the legislation, to allow any problems with the operation of the panel to be addressed sooner rather than later.
I have covered off on the legal requirement quite clearly that may inadvertently push medical professionals out of this very specialised field of VSC. In relation to broadening the assessment panel, I believe I have covered off on that also. To include parents in the discussions with the panel – in my experience parents perhaps are the most informed of any clinician when there is something that is not quite right with their children. Now we have access to the dark web, we have Google and we have people who are very, very up to date with what is happening, and some of it is misinformation. It would be very useful for parents to be involved in those discussions or at least be able to hear clinicians speaking about the conditions that involve their child, because parents want to make the right decision. If they can hear the pros and cons of different treatment options and of why this may be recommended in the treatment plan rather than this, it will provide, I believe, a better journey towards acceptance of the treatment plan and a smoother pathway towards support for the individual who will be the subject of this. The intent of the amendment is about trying to improve the communication flow rather than anything else. Then fourthly, to bring forward the review of the legislation – as I have stated, that is in reflection of some of the issues that have been seen in the ACT.
We understand that these amendments will not be able to be considered today, so it is only for this reason that, under the standing orders, I wish to advise the house of amendments to this bill and request they be circulated. This is a reasoned amendment. I move:
That all the words after ‘That’ be omitted and replaced with the
words ‘this bill be withdrawn and redrafted to reflect further consultation with the medical sector.’
This is intended only to ensure the voices of paediatric endocrinologists and those groups who have not been involved to date who are flagging these concerns are heard. It is not intended to hold this up at all. I want to make that very, very clear. If we could put forward the amendments today, we would do so. The intention is that we know that there are opportunities here to improve this legislation. I am hopeful in this way that it is with good intent to make sure that we can get the right legislation passed and not have unintended consequences, unintended harm and an unintended reduction in the number of clinicians in this specialist field and that this be considered. In light of this amendment not being supported, I do urge the government to have those further discussions with the community, clinicians and the medical community, whether it is about with people with lived experience of dealing with the medical community and medical decisions through their diagnosis and treatment or whether it is anybody who has other relevant contributions to that and to please consider making these amendments prior to this bill being debated in the upper house.
As I said, the intention is not to delay the passage of this legislation. The intent is to strengthen it and ensure that people who are born with variations in sex characteristics can access safe care in Victoria’s health system and that we can ensure that the dignity and respect that they deserve is continued through appropriate consent and appropriate treatment.