InterAction: “The Missing Voice Report: a thematic analysis and stories of ongoing medical interventions on intersex children in Australia”
Michael Barnett OAM
“The Missing Voice Report: a thematic analysis and stories of ongoing medical interventions on intersex children in Australia”
Equality Australia has released a new report offering rare insight into the medical interventions currently being performed on intersex children in Australia, and the rationales driving these decisions.
This groundbreaking report was developed in collaboration with InterAction for Health and Human Rights and is the result of a three-year investigation led by Equality Australia. As part of this process, Equality Australia lodged Freedom of Information requests with every major children’s hospital in the country to uncover what procedures were carried out on children with innate variations of sex characteristics between 2018 and 2023. Equality Australia's report also contains the stories of 11 people with innate variations of sex characteristics.
Equality Australia state:
What we found is deeply concerning: intersex children in Australia are still at risk of being exposed to medical interventions that could safely be delayed until they are old enough to participate in decisions about their own bodies. This must change. Australia urgently needs independent oversight bodies to protect the autonomy and rights of intersex children, as well as consistent clinical documentation across all hospitals. Most importantly, state and territory governments must pass laws that prohibit unnecessary medical procedures on children who are too young to provide consent. We owe it to parents who need clear and accurate information, to clinicians who deserve better support when navigating complex decisions, and to future generations of intersex children.
The report is accompanied by three expert technical reviews of selected FOI materials. The three reviewers were:
- Dr Morgan Carpenter, bioethicist, executive director of InterAction and Associate Professor at University of Sydney School of Public Health
- Dr Arlene Baratz, medical doctor; medical liaison for interACT (US), formerly Intersex Society of North America
- Hudson Institute of Medical Research, Victoria
These reviews helped to shape the report and its findings. This work was followed by a further thematic review by Equality Australia and Dr Morgan Carpenter of all FOI materials capable of analysis.
Dr Carpenter comments:
Clinicians in this field have asserted that adults who complain received “obsolete treatments”, and their techniques have changed. I analysed recent records of team discussions in children’s hospitals for Equality Australia and InterAction. Many of the children whose treatment is discussed are still being treated in paediatric hospitals. The information disclosed is troubling and often distressing. Children with intersex variations are still not being treated in line with community expectations and human rights standards. Without accountability and deterrents this will not change.
We thank the community members who contributed their stories. We thank Equality Australia for this work, and their warm and generous collaboration with us. We thank the expert reviewers. And we thank our community, our allies and supporters for sharing this story and helping to raise awareness as we seek to bring about positive change to the health and human rights for people with innate variations of sex characteristics.
Read Equality Australia's post and access all the reports
Equality Australia's report
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Dr Morgan Carpenter's report
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Dr Arlene Baratz's report
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The Hudson Institute of Medical Research report
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Equality Australia factsheet
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Documents released under Freedom of Information legislation
These documents, redacted at source, are available on the Equality Australia website.