The Australian Human Rights Commission has released a new report which makes significant recommendations to protect the human rights of people born with variations in sex characteristics. 

The report, Ensuring health and bodily integrity: towards a human rights approach for people born with variations in sex characteristics, makes 12 recommendations for a human rights-based approach to decision-making on medical interventions.

“This report is the culmination of over three years of extensive consultations, including with people born with variations in sex characteristics, who have strongly advocated for their right to life, bodily autonomy and integrity,” said Commission President Emeritus Professor Rosalind Croucher AM.

“I acknowledge the contribution of Edward Santow, in his capacity as Human Rights Commissioner, in leading the Commission’s work and resulting in this important report.

“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.

“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,” Professor Croucher said.

The report’s 12 recommendations aim to ensure that only medical interventions that are medically necessary may occur without the consent of people under the age of 18, consistent with international human rights law.

The Commission recommends legislative reform of oversight mechanisms by:

• Establishing Independent Panels with responsibility to decide whether to authorise medical interventions in respect of children born with variations in sex characteristics;
• Defining the circumstances in which such interventions on children without personal consent may be authorised, which should be limited to circumstances of medical necessity; and
• Recognising that in emergency situations there should be an expedited authorisation process or, where this still does not provide time to deal with the emergency, a requirement for subsequent notification of the Independent Panel.

In addition, the Commission recommends the development of new National Guidelines to promote the best standards of clinical care. These Guidelines would also include guidance on:

• Obtaining informed consent and ensuring affected children and younger people are involved in decisions;
• The application of human rights principles in determining whether a medical intervention is a medical necessity, and
• Requirements for independent authorisation of certain medical interventions.

In conducting its research, the Commission heard from people with lived experience including Australians born with variations in sex characteristics, their parents, and advocacy organisations. The Commission also sought input from clinicians, legal and human rights experts, and government agencies. The Commission greatly appreciates the input from all stakeholders, particularly from those with lived experience for whom recounting past harms can be traumatic.

Further recommendations include the provision of greater psychological peer support services, and greater awareness to reduce stigmatisation of people born with variations in sex characteristics.

“Too often people in the intersex community experience stigma, shame and a lack of sensitivity and awareness due to no fault of their own,” Professor Croucher said.

‘We acknowledge these issues are difficult, emotional and complex — and that clinicians and parents are taking the action they believe is best for their children and patients.

“This is why our recommendations have been informed by a human rights approach, to improve decision making processes and provide greater clarity for clinicians, and support for parents.

“The reforms set out in the report will ensure the medical profession and wider community have the guidance they need so intersex people can live their lives with the dignity and autonomy they deserve.”

Ensuring health and bodily integrity: towards a human rights approach for people born with variations in sex characteristics is available to read on the Commission’s website at https://humanrights.gov.au/intersex-report-2021