Frequently asked questions about the Variation in Sex Characteristics (Restricted Medical Treatment) Bill 2023

This Bill is a key part of the ACT Government’s commitment to better support people who have variations in sex characteristics. This commitment is in the Capital of Equality First Action Plan 2019-2021. The ACT Government committed to collaborate with:

• people with variations in sex characteristics
• human rights organisations, and
• health care professionals to achieve improvements.

Inappropriate medical interventions harm people with variations in sex characteristics. People with variations in sex characteristics need to make their own decisions about non-essential medical treatments that affect their bodies whenever they can.

Intersex people and their families will have better access to supports. New supports are:

• a unit to provide psychosocial support and care coordination
• more funding for peer support services
• the Board set up by the legislation will provide oversight of treatment decisions.

United Nations Commissioners and Committees have issued several statements related to people with variations in sex characteristics. These are important because the Australian Capital Territory is a human rights jurisdiction.

The Committee on the Elimination of Discrimination against Women recommended Australia:

…Adopt clear legislative provisions that explicitly prohibit the performance of unnecessary surgical or other medical procedures on intersex children before they reach the legal age of consent, implement the recommendations made by the Senate in 2013 on the basis of its inquiry into the involuntary or coerced sterilization of intersex persons, provide adequate counselling and support for the families of intersex children and provide redress to intersex persons having undergone such medical procedures.

The United Nations Committee on the Rights of the Child urged Australia:

To enact legislation explicitly prohibiting coerced sterilization or unnecessary medical or surgical treatment, guaranteeing the bodily integrity and autonomy of intersex children and providing adequate support and counselling to families of intersex children.

The United Nations Committee on the Convention on the Rights of Persons with Disability stated that it was seriously concerned about:

The unregulated use of involuntary surgery on infants and children born with variations in sex characteristics and of other intrusive and irreversible medical interventions without the free and informed consent of those undergoing such interventions or without evidence of the need to carry them out.

It recommended:

clear legislative provisions that explicitly prohibit the performance of unnecessary, invasive and irreversible medical interventions, including surgical, hormonal or other medical procedures on intersex children before they reach the legal age of consent; also provide adequate counselling and support for the families of intersex children and redress to intersex persons having undergone such medical procedures.

The Australian Human Rights Commission recommended:

Medical interventions modifying sex characteristics of children may be conducted without personal consent only in circumstances of medical necessity. Circumstances of medical necessity exist only where all of the following factors are present:

1. the medical intervention is required urgently to avoid serious harm
2. the risk of harm cannot be mitigated in another less intrusive way, and intervention cannot be further delayed
3. the risk of harm outweighs the significant limitation on human rights that is occasioned by medical intervention without personal consent.

This project is not confined to people whose sex is ambiguous. The United Nations, the Australian Human Rights Commission, community advocates and the medical literature also follow this approach. The Government has followed generally accepted definitions in defining the scope of the project. These have included:

• “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical.” (Lee et al 2006) [Congenital means present from birth, though it may be discovered at different stages in life]. “The cluster of conditions collected under the expression Disorders| Divergences| Differences of Sex Development (DSD), Conditions Associated with Reproductive Development (CARD), Intersex and Variations in Sex Characteristics (VSC) consist of those associated with atypical genetic, phenotypic or hormonal makeup” (Grover, Hanna and O’Connell 2020). “people born with sex characteristics that do not fit typical definitions for male or female bodies, including sexual anatomy, reproductive organs, hormonal patterns, and/or chromosome patterns.” (Office of the High Commissioner for Human Rights 2019). “people born with any sex characteristics that do not conform to medical norms for female or male bodies” (Australian Human Rights Commission 2021).
• “people [who] have innate sex characteristics that don’t fit medical norms for female or male bodies, and that create risks and experiences of stigma, discrimination and harm.” (Intersex Human Rights Australia 2022).

This project is about variations in sex characteristics. This is where someone’s innate sex characteristics differ from social or medical norms about male or female bodies. It is not just about instances where there may be ambiguity in the sex characteristics of a child at birth. Social, cultural and medical assumptions about ‘normal’ bodies make decisions about health care complicated.

People with variations and their families shared challenging experiences. Contrary to what some have claimed, these are not all cases in the past. We received evidence from a range of sources, including from people with variations, about:

• the treatments people are sometimes pressured to accept
• lack of information, and
• discrimination when making choices about their own bodies, when the choices may be different to other people's expectations.

The scope of the legislation is consistent with major medical reference works. These classifications include most common variations in sex characteristics, including Klinefelter Syndromeand Turner Syndrome.

In these two cases, the sex of the person with the variation is usually unambiguous (boys/men for Klinefelter Syndrome, girls/women for Turner Syndrome). This has sometimes been given as a reason to exclude these syndromes from the reform. Yet, ambiguity around sex has never been the focus of this reform. The government heard from some people with each of these variations wanted to be included because they want more information, more of a say in treatment decisions particularly as adolescents, and control over decisions involving their bodies.

Some people asked that these variations be excluded because they did not want any impediments to decision-making or care for children. They did not want barriers to treatment for physical health, including future fertility, of their child.

This highlights that it is important to increase the support and guidance for families, not decrease it. The reforms intend to support families to make better and safer decisions. The reforms intend to place psychosocial care at the centre of care.

There are some variations in sex characteristics that are not widely recognised as variations in published literature, though they do meet the medical definition of variations. They are bladder extrophy, epispadias, and hypospadias. Deciding whether to include or exclude them is complex. A recent Australian medical text described the issue:

“There are a number of diagnoses for which there is ongoing debate as to whether they belong under the DSD umbrella. In particular, this applies to structural anomalies such as bladder exstrophy and cloacal anomalies. Hypospadias, in its more severe forms, is increasingly recognised as a DSD, with specific genetic testing allowing recognition of variations in hormone production and androgen receptor sensitivity. But should the less severe forms of hypospadias be considered a DSD?” (Grover et al 2020 p.6).

At this stage, only reporting requirements apply to bladder exstrophy, epispadias and hypospadias (other than proximal hypospadias with cryptorchidism). The review of the legislation, scheduled for its second year of operation, will consider whether this is the best approach.

The decision to limit coverage of hypospadias in the scheme was a complex one. We weighed up a range of competing data, arguments and views.

The Government heard that many of these surgeries aim to make a boy’s body more stereotypical, including for functional reasons that may have no health benefit during childhood. The published literature also indicates this is a complex area of surgery with high rates of complication or more surgery.

The government also heard that hypospadias, where not associated with cryptorchidism, is not generally considered a variation in sex characteristics in published papers. It heard from parents of babies with hypospadias concerned about uncertainty around their child’s treatment pathway, particularly for many surgeries over an extended period.

Weighing up these differing factors, the Government decided to exclude hypospadias other than proximal hypospadias with cryptorchidism at the beginning. The Government will continue to monitor evidence about the appropriateness of this exclusion.

It is difficult to know whether it remains appropriate to exclude particular variations, without more information. Under the bill, doctors must provide de-identified data to the Board for people with the excluded variations, particularly hypospadias. In its Annual Report, the Board will publish summary data about these treatments, alongside data about the authorised treatments.

Restricted medical treatment will not include circumcision of the penis. This exclusion is not supported criticised by some stakeholders. Health professional associations, individual doctors, and intersex rights activists argued that circumcision should be included. Some argued that it is not appropriate to regulate some non-essential medical treatments of genitalia yet exclude one such treatment. Others argued it is a form of genital mutilation that violates a child’s rights.

Circumcision of the penis is excluded for several reasons:

• this Bill applies only to people who have a variation in sex characteristics. If circumcision of the penis were not exempted, this would mean people without a variation in sex characteristics could be circumcised, while those with a variation could not, despite there not necessarily being an underlying difference in the health circumstances between those two groups.
• there is a religious element to why some people seek to circumcise their children. Prohibiting circumcision would involve a different consideration of freedom of religious practices. This sits outside the scope of the project.

Offence provisions are a normal mechanism for supporting compliance with a law. The adverse effects of restricted medical interventions on people with variations in sex characteristics can be extremely serious. Outcomes can include lifelong psychological or physical pain, and unnecessary and permanent loss of fertility. The Bill ensures there are consequences for deliberate and reckless disregard for laws designed to protect vulnerable people.

Criminal offences create strong safeguards for any person at risk of breaching them. Criminal offences set high thresholds of proof, including for the intention of the person committing the offence. The purpose of these offences is deterrence.

Maximum penalties do not represent a typical penalty. Maximum penalties are for the most serious offence committed by the worst type of offender.  This would include, for example, the worst possible consequences for the victim.

This reform deals with actions that, in the worst circumstances, have extreme, lifelong adverse effects on the victim. We drafted the penalties with careful reference to other offences across ACT and national laws.

These include the penalties in offences concerning:

• importing or supplying medical devices that are not approved, if the use of the device would, or was likely to, cause harm to a person
• advertising of therapeutic goods in breach of legislative requirements, if the use of the advertised goods could, or was likely to, cause harm to a person
• performing, or offering to perform, a cosmetic procedure on a child, unless in accordance with certain exceptions
• performing a sexuality or gender identity conversion practice on another person (the recipient); and the recipient is a protected person
• performing psychiatric surgery on a person and the doctor has no approval to do so from the chief psychiatrist, or the doctor has been told that the person refuses to have the surgery.

Yes.

Governments set many ‘boundaries’ for parents making decisions for their children, to help keep children safe. The current bill sets some limits to the choices doctors and parents can make. The bill incorporates existing limitations and decision-making principles.

Among the many settings where there is existing oversight of, or restriction on, parental decision-making are:

• electro-convulsive therapy and psychiatric surgery
• all medical procedures that may lead to sterilisation
• conversion practices
• female genital mutilation
• use of safety equipment in vehicles, such as booster seats and safety belts
• exposure to passive smoke.

All these areas of life can involve significant risks to children’s rights and health. Regulation can guide better decision-making and mitigate risks. This is also the case for the current reform.

Many people in the ACT have experience and expertise relevant to the Assessment Board. The Government expects some of these people will be suitable to appoint. There is also no legal rule that members must be from the ACT. This is a nationally and internationally leading reform. The Government will invite people from across the country and potentially internationally to apply to join the Board. It is an opportunity to contribute to a reform that other Australian jurisdictions and other countries can observe and learn from.

People with variations in sex characteristics experience higher risk of discrimination or stigmatisation. This can affect their mental health or wellbeing.

If someone is at risk of discrimination or stigmatisation, invasive treatment that will make irreversible changes to a person’s body is not the appropriate response. The appropriate response is to address stereotypes and the sources of discrimination or stigmatisation. For example, providing psychosocial supports or creating safe and inclusive environments through training and awareness.

Discrimination, stigmatisation and pressure to conform with sex or gender stereotypes are community issues that the community as a whole must take responsibility for. We cannot allow measures to continue that involve the individual experiencing the harm having their body ‘corrected’. The source of the harm is the existence of, and lack of protection from, discrimination. The person’s body is not the source of the harm.

There is no evidence that permanent medical treatment can reduce psychological harm, bullying, stigma or discrimination. Permanent medical treatments come with the medical risks of the treatment itself. There is also a risk that the person themselves would not choose the medical treatment. Assessment committees will not approve treatments that are solely to address discrimination or stigma, because of the lack of evidence of benefits and the risk that treatment itself could cause harm.

Discrimination or stigmatisation experienced by people with variations in sex characteristics will be managed in the same way as discrimination of other kinds, such as discrimination based on race or sex. It is not considered appropriate to address discrimination or stigmatisation of a child of colour by requiring them to change or disguise their racial identity. It is not considered appropriate to address sexist treatment of a child by altering their appearance or behaviour to conform to a gender norm. It is not considered appropriate to recommend that women alter their dress or activities to avoid harassment. This bill protects children from irreversible modifications of their bodies performed for similarly inappropriate reasons.

Assessment committees will consider all other reasons for a permanent medical treatment. This may include evidence of psychological harm more generally or the prescribed person's mental health.

The Health Records (Privacy and Access) Act 1997 will apply to health records created under the Bill. This existing legislation protects privacy and rights of access. There are extra privacy protections in the Bill. The Board must not disclose personal information in its annual report or when consulting on a general treatment plan. The Board must get permission before sharing identifying information when seeking expert advice.

The Government will use a rigorous selection process to appoint members to the Assessment Board. Members will bring diverse relevant skills to the Board's decision-making processes. Members on committees will have relevant experience from medicine, human rights, ethics, psychosocial care, and lived experience of variations in sex characteristics.

Committee members will work together to apply the criteria in the Bill. The committees must adhere to principles of administrative law. They must provide procedural fairness to applicants, be free of bias, take into account only relevant considerations, and cannot consider any irrelevant considerations. The Bill contains some specific protections for applicants, including that the committee share with applicants any relevant information it has available to it. There are also minimum time frames for a committee to respond to an application, to ensure applicants are not left waiting for long periods of time.

This reform will make an important difference for people, particularly children, who have variations in sex characteristics. These people will represent a small but important fraction of the patients to whom health professionals in the ACT provide care. Health professionals will have access to training and development provided by ACT Health and Canberra Health Services before the scheme begins. The Restricted Medical Treatment Assessment Board will have a secretariat to provide advice on how to make applications for treatment plans, and on how assessment committees work.

In addition to individual treatment plans, there will be general treatment plans for some types of treatment. General treatment plans will be available to any health professional or family. If the doctor is satisfied the treatment falls within the general treatment plan, the treatment does not need an individual application. The doctor must also be satisfied that the individual patient has received sufficient information and that their views have been considered.

The Government expects medical professional associations, groups of health professionals, multi-disciplinary teams, or community advocacy organisations for people with variations in sex characteristics to apply for general treatment plans

A general treatment plan application will need to show how it meets the criteria in the Bill. The Government expects the secretariat for the Restricted Medical Treatment Assessment Board to release templates that will assist in the preparation of treatment plans. It will be able to provide advice to groups considering making an application. The Government expects that the Psychosocial Care Unit in Canberra Health Services will be able to play a role in applications for general treatment plans.

General treatment plans do not need extensive original research. A published evidence-based guideline could form the starting point for a general treatment plan application. The application would need to show how treatments done under that plan will meet the criteria in the Bill.

There will be a community consultation process as part of the process for general treatment plan applications. The Restricted Medical Treatment Assessment Board will organise the consultation, not the applicant. The Board will provide copies of any non-confidential submissions to the applicant. The applicant will have an opportunity to consider the submissions, and to make any amendments they think are appropriate to the application.

The Board will make approved general treatment plans available online.

If your organisation wants to apply for a general treatment plan, you first need to check if is covered by a Ministerial declaration of people eligible to propose general treatment plans. If your organisation is not already covered, you can write to the Minister asking them to declare your organisation as eligible.

As long as your organisation is in the ministerial declaration, you are free to propose a general treatment plan. Organisations will be able to propose general treatment plans up to a year before the full regulatory regime takes effect. This ensures that general treatment plans are in place from the outset.

You do not have to go to court to seek a review of a decision of an assessment committee if you do not agree with it. Any affected party (like a parent, or a person’s doctor who applied for a treatment plan) can apply for a decision review within 28 days of the decision being made. A new committee, called a review committee, will be established to review the decision. If you are still not happy with the result, you will be able to apply to the ACT Civil and Administrative Tribunal for a further review.

The Government is preparing other supporting documents for the Bill. This includes:

• finalising a Regulation with detail to support the legislation
• declaring the list of people eligible to propose general treatment plans
• ministerial Guidelines to provide further detailed guidance for implementing the Bill.

The Government is working to have these documents in place before the Bill commences.