Protecting the rights of people with variations in sex characteristics
The ACT has introduced law governing the medical treatment of people born with sex characteristics that do not fit the typical definitions for male or female bodies.
Intersex is also a word used for people with variations in sex characteristics.
The Variation in Sex Characteristics (Restricted Medical Treatment) Act 2023 came into effect on 23 June 2023. The Act gives protections to people with variations in sex characteristics. It allows them to make their own decisions about non-essential medical treatments that affect their bodies when they can.
This page has information for parents, guardians and medical professionals about the law governing restricted treatments of people with variation in sex characteristics who cannot consent to treatment themselves.
The law only applies to people who have a variation in sex characteristics, and who are either:
- children who do not have decision-making capacity in relation to the medical treatment, or
- adults subject to a guardianship order that applies to their medical treatment.
Protections under the Act
Not everyone is born with sex characteristics that fit typical medical and social definitions of male or female bodies. These people may be called or identify as intersex, having a variation in sex characteristics or having a difference of sex characteristics.
Visit the Intersex Human Rights Australia website to learn more about the terms people with variations in sex characteristics use for themselves.
Inappropriate medical interventions harm people with variations in sex characteristics. People should be able to make their own decisions about non-essential medical treatments that affect their bodies. The Act protects people with variations in sex characteristics who cannot consent for themselves.
Under the law, a treating healthcare provider, parent, or guardian who is responsible for the child or person without decision-making capacity, can apply to have certain kinds of regulated treatments performed on the child or person under a guardianship order.
The law is voluntary until 23 December 2024. Until then, having an individual treatment plan for restricted medical treatment is not mandatory, and health practitioners do not have to report reportable treatments.
For more information, go to Applying for restricted treatments for people with variations in sex characteristics.
Variations in sex characteristics
Under the Act, a variation in sex characteristics refers to a condition a person is born with that involves atypical sex characteristics.
This means any sexual anatomy, reproductive organs, hormonal patterns or chromosomal patterns that are more diverse than stereotypical definitions for male or female bodies. The law excludes the following conditions as a variation in sex characteristics:
- bladder exstrophy
- epispadias
- hypospadias, other than proximal hypospadias with cryptorchidism
- polycystic ovary syndrome
- undescended testis
A person can have multiple variations in their sex characteristics.
If someone had an excluded condition like epispadias, along with another variation that is not excluded, they may be covered by the law.
If they are covered by the law, any procedure that would be a restricted medical treatment will require an application, including if it relates to a condition that is excluded.
Whether a person is a person with variations in sex characteristics, and the nature of that variation, is not determined by the diagnosis given by a specific medical professional, including where that is the applicant or a treating physician.
How the law defines a variation in sex characteristics is not necessarily in full conformity with the majority of clinical opinion. If you are unsure of whether a person has a variation in sex characteristics for the purposes of the law, you may want to seek a second medical opinion or legal advice.
Impact on transgender and gender diverse people
People born with variations in their sex characteristics differ from transgender and gender diverse people. Transgender and gender diverse people generally have an experience of gender that is different to the sex that was recorded for them at birth. These individuals may not have a variation in their sex characteristics and will not necessarily be covered by the Act.
While a transgender person may also be a person with a variation in sex characteristics, this is not the case for all transgender people. Where a person who does have a variation in sex characteristics is seeking gender affirming treatment, then if they have the legal capacity to consent to that treatment, they are not covered by the law.
Likewise, the gender expression of people with variations in sex characteristics is diverse and can include cisgender, transgender, and non-binary identities, amongst others. Their gender does not affect their protected status under the law.
Exemptions for urgent treatment
A treatment plan is not required for urgent restricted medical treatments, which must be undertaken urgently to save a person’s life, prevent serious damage to their health or prevent them from suffering from significant pain.
Although urgent restricted medical treatment does not require a treatment plan, the healthcare provider must still report the treatment to the Assessment Board.
The Variations in Sex Characteristics Restricted Medical Treatment Assessment Board
The Variations in Sex Characteristics Restricted Medical Treatment Assessment Board receives all applications for restricted medical treatments for people with variations in sex characteristics.
The board president will appoint a committee to assess each application.
Protecting privacy
The Health Records (Privacy and Access) Act 1997 and Territory Records Act 2002 apply to health records created under the Act. This existing legislation protects privacy and rights of access.
There are extra privacy protections in the Variation in Sex Characteristics (Restricted Medical Treatment) Act .
The Assessment 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. This includes any information that identifies a child, person under guardianship, or their decision maker or allows for their identity to be figured out.
The relevant records are kept until the child in the application turns 45, or 7 years after the record is made – whichever is later. For a child this will mean keeping the records until they turn 45.
Consent
The law is intended to protect people with variations in sex characteristics who cannot consent to treatment themselves. It is not intended to prevent people who can consent from accessing treatment.
The law only applies to people who have a variation in sex characteristics, and who are either:
- children who do not have decision-making capacity in relation to the medical treatment, or
- adults subject to a guardianship order that applies to their medical treatment.
Decision-making capacity means the ability to legally consent to treatment. A child with sufficient understanding and cognitive development to enable them to fully understand the proposed treatment has decision making capacity.
A determination of decision-making capacity will assess the young person’s ability to understand the risks and benefits of treatment and will vary depending upon the complexity of the proposed treatment.
Where a young person is deemed to have decision making capacity, parental or guardian approval is not required for treatment to proceed. No individual treatment plan is required, but the informed consent of the child must still be obtained, as with any medical treatment.
If the child is not deemed to have decision making capacity, restricted medical treatment that relies on the child’s consent may break the law.
Information for individuals, families, and medical practitioners
The ACT Public Advocate is an independent statutory position within the ACT Human Rights Commission. The position of Public Advocate is currently held by Ms Jodie Griffiths-Cook who is supported by a small team of skilled advocates.
The Public Advocate is responsible for reviewing certain actions taken and decisions made by various agencies (including government and the courts) in circumstances where there are potential risks to the rights and interests of persons to whom these actions/decisions relate. In doing so, the Public Advocate seeks to ensure that these actions/decisions protect and promote the person’s rights and interests, are in accordance with the law, and that any limitation of rights is reasonable and proportionate given the circumstances.
The Public Advocate has a role in reviewing all treatment plans applied for under the Variation in Sex Characteristics (Restricted Medical Treatment) Act 2023 (the Act), as well as the decisions made in respect of same.
The Act requires the President of the Restricted Medical Treatment Assessment Board to provide a copy of any application to the Public Advocate. Additionally, each assessment committee established to decide an application for an individual treatment plan must give a copy of its decision and reasons for it to the Public Advocate. The Public Advocate must also be advised about any internally reviewable decisions made by an assessment committee in relation to an application.
Individuals, families, and medical practitioners can contact the Public Advocate at any point in the making or deciding of an application should they have concerns about the actions taken and/or decisions made.
If individuals, families, or medical practitioners have any queries about the Public Advocate’s role in the application process or wish to raise concerns about the rights and interests of an individual being at risk, they may contact her office at public_advocate@act.gov.au or by telephone at (02) 6205 2222.
More information on the Public Advocate is available on the ACT Human Rights Commission website.
Reporting requirements
Refer to Reporting requirements on the restricted medical treatments for people with variations in sex characteristics page.