On 27 February the Victorian Health Department published an important new medical decision-making framework for the treatment of intersex infants, children and adolescents.
It has taken us some time to draft a full response, due in large part to work preparing submissions for the Senate Inquiry on involuntary sterilisation, but also good news at federal level, on anti-discrimination legislation and gender recognition. Finally, here it is:
The document is described as:
a resource for Victorian hospitals responsible for the healthcare of infants, children and adolescents with intersex conditions… The resource synthesises the advice of the Victorian Government, medical, human rights, ethical and legal experts, and community advocates, and outlines best-practice principles to be applied to decision making. It is intended to assist decision makers to safeguard the best interests of patients
The contribution of community advocates, including OII Australia, is evident throughout the document. While we have concerns with several matters in the framework document, detailed below, we broadly welcome its publication as a significant step forward in the care of intersex children in the state. Immediately on publication, the framework document represents best practice in Australia.
Our report evaluates the framework document with reference to six principles. We find that work is, as yet, incomplete. The report fails to fully satisfy our recommended principles:
- Medical intervention should not assume crisis in our difference, nor normalisation as a goal.
Psychosocial normalisation rationales are still considered therapeutic.
- Medical, and in particular surgical, interventions must have a clear ethical basis, supported by evidence of long term benefit.
There is no evidence that treatment is supported by long term and/or comparative studies.
Studies suffer from selection bias; those we are aware of are limited to studies of patients treated by the Royal Children’s Hospital.
- Necessary medical intervention on minors should preserve the potential for different life paths and identities until the patient is old enough to consent.
Psychosocial therapeutic interventions are still permitted, notably in cases, like the child with 46,XX CAH in In the Matter of the Welfare of a child A, where surgery is considered a safe option.
- Medical intervention should be deferred wherever possible until the patient is able to freely give full and informed consent; this is known as “Gillick competence”.
Early intervention is still permitted, notably where there is a subjective assessment that surgery is a safe option.
- The framework for medical intervention should not infantilise intersex.
The framework recognises that is applicable to infants, children and adults, and there remains a danger that treatment protocols may place insufficient weight on the impact of treatment on the future adult, however, the report does attempt to satisfy this concern.
- The framework for medical intervention must not pathologise intersex through the use of stigmatising language.
The use of the term ‘intersex’, notably with clinician support, is strongly welcomed. The use of the term ‘condition’ is less welcome, and it is hoped that future versions of the framework will focus more on the intersex person rather than a perceived impairment.
Issues related to “therapeutic” psychosocial surgical interventions remain of deep concern, and they should be of concern to all human rights advocates.
We are grateful to have had the opportunity to respond to the report, in confidence, prior to publication. We would have welcomed a public consultation period for the framework, and we hope that it will remain under review.
- Download our response to the Vic Health framework as a PDF
- The Vic Health framework document: “Decision-making principles for the care of infants, children and adolescents with intersex conditions”
- The OII Australia submission was written by our secretary, Morgan Carpenter.