The Australian Human Rights Commission has called for legislation to prohibit medically unnecessary interventions performed without consent on people born with variations in sex characteristics.
In its new report released on Monday, the AHRC made significant recommendations to protect the human rights of intersex Australians when it comes to decision-making on medical interventions to modify these characteristics.
The findings were welcomed by advocacy groups Intersex Human Rights Australia and Equality Australia, which launched a new campaign backing calls for laws to end the "harmful practices" on intersex people without their consent.
"Today, we're calling on state, territory and Commonwealth governments to act to end these abuses. We need new laws that recognise our right to decide what happens to our own bodies," Morgan Carpenter from Intersex Human Rights Australia said on Monday.
Intersex is an umbrella term that describes people born with biological characteristics - such as reproductive or sex anatomy and chromosome pattern - that do not fit the typical definitions of male or female.
The report says people with lived experience have increasingly raised concerns with the AHRC, the federal government and the United Nations about human rights violations when it comes to medical inventions.
“The commission’s report reinforces the notion that people born with variations in sex characteristics have a right to make decisions about any medical intervention on their own bodies," said AHRC President Emeritus Professor Rosalind Croucher AM.
“This includes children and younger people – who deserve to have their views heard - and to be empowered to participate in decision making regarding any medical procedures on their bodies."
The report made 12 recommendations that aim to ensure that only medical interventions that are necessary may occur without the consent of people aged under 18, consistent with international human rights law.
This would include circumstances where the medical intervention is required urgently to avoid serious harm, the risk of harm can't be mitigated in a less intrusive way, or intervention cannot be further delayed.
The report recommends federal, state and territory governments establish independent panels with responsibility to decide whether to authorise interventions for those under the age of 18.
This would only occur if the child has provided personal consent, or - if they're unable to consent - the intervention is deemed necessary.
The AHRC's report called for "legislation to prohibit medical inventions in relation to people under the age of 18 born with variations in sex characteristics otherwise than in accordance with the medical necessity principle".
"Additionally, there should be appropriate criminal penalties for carrying out a relevant intervention without authorisation from an independent panel."
It also recommended new national guidelines be developed to include information on how to obtain informed consent and ensure affected children and younger people are involved in decision-making.
Addressing stigma
The report said more resources were needed to increase awareness in the community among other settings, and to reduce the associated stigma.
"While individuals’ experiences varied widely, there were common themes concerning distress at physical and psychological consequences, stigma, lack of social and personal support, and challenging interactions with the health system," the report said.
"Many people with lived experience told the commission that medical interventions that had occurred in both childhood and adulthood had a variety of negative consequences on their physical and mental wellbeing.
"They also emphasised how feelings of isolation further exacerbated poor mental health, reinforcing a sense of being somehow ‘abnormal’."
The Victorian government has committed to prohibiting deferrable medical interventions on intersex people without personal consent, and introducing an oversight panel to ensure compliance.
The ACT government has also pledged a plan for managing deferrable medical interventions.
CEO of Equality Australia Anna Brown urged other states and territories to follow suit.
“Thanks to the tireless work of intersex advocates, the ACT and Victorian governments have made significant commitments to strengthen the rights of intersex people to make choices about what happens to their own bodies, but are yet to introduce legislation," she said.
“All states and territories must act urgently to introduce oversight schemes with appropriate prohibitions on unnecessary medical procedures performed on intersex people without their personal consent."
