A Bill for the protection of intersex rights in a medical setting

In a move described as a "landmark moment on intersex rights" by Intersex Human Rights Australia, the Australian Capital Territory could soon be the first Australian jurisdiction to introduce legislation to protect the human rights of people with variations in sex characteristics (also known as intersex people) in medical settings.

Consultation on the draft Variations in Sex Characteristics (Restricted Medical Treatment) Bill 2022 closed on 8 July 2022 and a report summarising the feedback received will be prepared and released by the ACT Government. The Bill is likely to be introduced into Parliament later this year; if passed, the Bill will prevent deferrable medical treatments which change a person's sex characteristics, being undertaken on a person without their consent.

How the Bill protects intersex rights

In addition to protecting the human rights of people with variations in sex characteristics, the Bill is intended to:

• ensure that, whenever possible, a person with a variation in sex characteristics makes decisions about, and gives informed consent to, any “restricted medical treatment” (as defined in section 7 of the Bill);
• ensure that decisions made about restricted medical treatment being undertaken on a “protected person” are consistent with the principles mentioned in section 10 of the Bill; and
• improve the public’s understanding about variations in sex characteristics and the rights of people with a variation in sex characteristics.

A “protected person” is defined in section 8 of the Bill as being someone who is both a person with a variation in sex characteristics and who does not have decision-making capacity.

Variation in sex characteristics: the Bill’s definition

“Sex characteristics” refer to biological or physical characteristics of a person (such as sexual anatomy, reproductive organs, hormonal patterns and/or chromosomal patterns) rather than their gender identity.

The Bill defines a “variation in sex characteristics” (whether diagnosed or not), by reference to a list of variations prescribed by regulation, rather than a principle-based definition. This approach is intended to provide clarity of the definition for individuals, families and health practitioners. The draft list was developed through review of medical research and in discussion with people who have variations in sex characteristics. The draft list has been provided in the Proposed reforms to provide better care and support for people with variations in sex characteristics - Draft Legislation Consultation (2022).

What amounts to decision-making capacity

Under the Bill a person has capacity to make a decision in relation to restricted medical treatments if the person can, with assistance if needed:

1. understand when a decision about restricted medical treatment for the person needs to be made;
2. understand the facts that relate to the decision;
3. understand the main choices available to the person in relation to the decision;
4. weigh up the consequences of the main choices;
5. understand how the consequences affect the person;
6. on the basis of paragraphs (a) to (e), make the decision; and
7. communicate the decision in whatever way the person can.

There are a number of considerations which must be taken into account when determining if a person has capacity, including whether a person understands the facts that relate to the decision to undergo a restricted medical treatment, and whether they can understand how the consequences of that decision will affect them.

A person is taken to not have decision-making capacity in relation to a restricted medical treatment if, under the Guardianship and Management of Property Act 1991, an order under section 7(2) or declaration under section 69(2) of that Act has been made or is in force.

“Restricted medical treatments” and consent

Under this Bill, medical procedures which temporarily or permanently change a person’s sex characteristics are treated as “restricted medical treatments” and will only be permitted in limited circumstances.

The Bill provides that for a restricted medical treatment to be conducted on an intersex person with capacity, that person must give informed consent to the medical treatment (there are some exceptions to this, including permitting urgent medical or surgical treatment taken on reasonable grounds to save a person's life or to prevent serious damage to the person's health).

If the person is a protected person, as set out above, and therefore cannot give informed consent, a restricted medical treatment cannot be conducted on that person unless there is an individual medical treatment plan in place. Individual medical treatment plans will be prepared through an expert panel appointed by the Minister and would permit restricted medical treatment to be undertaken on a protected person in limited circumstances.

Critically, where a decision is being made about undertaking restricted medical treatment on a protected person, the legislation provides this decision should not be influenced by:

• conforming with perceived norms of appearance or function;
• reducing the risk of discrimination or stigmatisation; or
• financial considerations.

The need for reform to protect intersex rights

The United Nations General Assembly’s Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment (February 2013) recognised the prevalence of discriminatory practices against intersex people in a medical setting. In particular, the Report stated:

"Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, ‘in an attempt to fix their sex’, leaving them with permanent, irreversible infertility and causing severe mental suffering."

The Report found that these procedures are "rarely medically necessary" and have been criticised as being "unscientific, potentially harmful and contributing to stigma".

In 2017, a joint statement (the “Darlington Statement”) was published by Australian and Aotearoa/New Zealand intersex organisations and independent advocates calling for effective legislative protection from discriminatory practices on grounds of sex characteristics. In pursuit of cultural change, the Darlington Statement calls for an end to the stigmatisation and unnecessary pathologisation of intersex bodies.

Equity Australia advocates for the end of deferrable and unnecessary medical interventions on intersex people without their informed consent. In its report, A Victorian Intersex Oversight Scheme: A Consultation Paper on a Legal Scheme to Protect People from Medical Interventions on Their Sex Characteristics Without Personal Consent, it proposed a regulatory framework for the protection of the intersex community, and highlighted the need for cultural change, including in the medical and legal sectors. Many of the recommendations of this report are reflected in the draft Bill.

The people who wrote this article are not intersex and have relied on the information published by organisations that advocate for intersex rights. The language used in this article is based on the current accepted terms at the time of publication, and should be considered "working language", meaning that in the future, language used may require revision and/or reconsideration.