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.
Key findings
- Intersex children remain at risk of harm from medical procedures that could be deferred until they are old enough to consent themselves.
- Non-medical reasons and unbalances considerations were repeatedly observed (109 instances observed in analysis) in treatment discussions without appropriate attention to the risk of harm the decision may cause, including:
- Cosmetic justification (46.99%)
- Gender reinforcement (16.87%)
- Unbalanced medical risk (25.30%)
- Parental distress/confusion (62.65%)
- The system lacks a robust, independent framework for resolving complex cases, including:
- processes for handling escalation of clinical disagreement and standardised assessment criteria;
- weighting of risk and/or harm versus benefits to support decision-making; and
- access of diverse lived and professional experience and clinical expertise to inform decisions.
Recommendations
- Legislative response: state and territory governments should introduce legislation to establish:
- An independent oversight panel consisting of individuals with expertise in relevant clinical practice, law and human rights, ethics and lived experience, to review and approve proposed treatment plans, guided by clear assessment and approved criteria.
- A prohibition on medical treatment that modifies the sex characteristics of a protected person without their consent, expect in an emergency or where an approved treatment plan is in place.
- Improved documentation and reporting: hospitals and health services should take immediate action to:
- Strengthen the quality of documentation and record keeping.
- Implement reporting standards to improve access to data to inform decision-making.
- Listening to and working with intersex people: state, territory, and federal governments should:
- Co-design information and support systems with peer-led organisations representing people with variations in sex characteristics, to ensure that intersex voices are centred.
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.
The report is informed by three 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