13 January 2023 – Equality Australia has today released a legal framework to protect people born with variations of sex characteristics from unnecessary medical procedures without their consent.
The national LGBTIQ+ rights organisation is calling on all Australian states and territories to adopt an intersex oversight scheme, similar to that recommended in its report to the Victorian Government, to protect future generations of people with an intersex variation.
“This is about protecting everyone’s right to decide what happens to their own bodies,” said Equality Australia Legal Director Ghassan Kassisieh.
“Medical procedures that modify a person’s sex characteristics involve profound and deeply personal questions that a person can only truly answer for themselves.”
Equality Australia’s report was commissioned by the Victorian Government following its July 2021 commitment to a “human rights evidenced-based framework” before determining the need for surgery or hormonal interventions on intersex people — especially infants and children.
In June the ACT led the way in starting consultations on a draft law prohibiting unnecessary medical treatments on intersex people’s sex characteristics until the person can make the decision themselves.
“We welcome the commitments and steps taken by both the Victorian and ACT governments and urge all jurisdictions in Australia to consider our Victorian proposal and adapt it as their own,” said Mr Kassisieh.
“Every state and territory across Australia and the Federal Government has a part to play in developing a national approach so that every intersex person in our country can grow up to live a full and dignified life in which they decide what happens to their own bodies.”
Where personal consent is not possible, the report recommends an oversight body made up of five people, supplemented by a sub-panel of three members to determine less contentious cases. As a safeguard, urgent medical interventions would still be permitted in situations where it is not possible to defer medical treatments until the person is old enough to consent.
“The decisions made by the proposed oversight body must always preserve the greatest range of options so that people can decide for themselves what they want in the future,” said Mr Kassisieh.
Equality Australia developed its recommendations following a comprehensive consultation process which included feedback from 100 individuals and organisations through workshops, interviews and written submissions.
“During the consultation process we heard stories of discrimination, stigma, pathologisation, loss of agency and violation of human rights,” said Mr Kassisieh.
“It was heartbreaking to hear first-hand the suffering and loss experienced by some people who had surgeries performed on their bodies when they were too young to have a voice. People told us they lived with the consequences of decisions they had no real part in, and which could have waited until they were old enough to have a say.”
The final report incorporates feedback from people with innate variations of sex characteristics as well as their parents, partners, health professionals and other stakeholders.
The amendments include strengthening the decision-making framework to prioritise bodily integrity, self-determination and physical autonomy. Parents and family members would be invited to panel meetings and could be represented among panel members. A person with a similar variation could also sit on the panel as well as, where appropriate, mental health professionals, sexual health professionals and fertility specialists.
Equality Australia’s proposal for an oversight scheme builds on reforms in a growing number of jurisdictions including Germany, Iceland and Portugal.
Morgan Carpenter, bioethicist and Executive Director of Intersex Human Rights Australia, a globally recognised centre of expertise by and for people with innate variations of sex characteristics, said:
“We were pleased to work with Equality Australia on a contract with the Victorian government to develop legislative proposals. Too often decisions about the needs of people with intersex variations have been made by and for people without lived experience, and without regard to the rights of the child. We’re grateful for the Victorian government for commissioning this work, and we look forward to the government publishing concrete proposals for reform.”
The report to the Victorian government and background documents are available on the Equality Australia website: https://equalityaustralia.org.au/resources/victorian-oversight-panel/
Background for journalists:
- ‘Intersex’ is an umbrella term that refers to people born with hormonal, chromosomal or anatomical variations of sex characteristics that do not align with social or medical norms for male or female bodies.
- This can include variations in sex chromosomes, hormones, reproductive organs and/or sexual anatomy.
- ‘Intersex’ describes around 70 different variations related to a person’s bodily sex characteristics and not a gender identity or sexuality.
- In October 2021, the Australian Human Rights Commission (AHRC) urged all Australian governments to implement measures that prevent harmful medical interventions on intersex people without personal consent.
- To date, only the ACT and Victorian governments have publicly committed to ending such procedures.
The consequences of early and unnecessary medical procedures can include (according to the AHRC report):
- Loss of sexual function and sensation
- Loss of fertility
- Urinary tract issues, including incontinence
- A need for ongoing medical treatment/repeat surgeries
- Incorrect gender assignment
- Loss of autonomy and loss of choice.