Interconnect Health Research is a five-year project funded by the Medical Research Future Fund, working to develop co-designed, integrated, person-centred models of care to improve the physical and mental health of people with innate variations of sex characteristics (intersex variations/differences of sex development).
The need
People with IVSCs are a diverse population who share experiences of having innate sex characteristics (such as chromosomes, gonads or hormones) that differ from medical norms for female or male bodies. People with IVSCs have health needs that must be addressed in a timely way across all life stages, and in ways that respect their rights, values and preferences. However, in most Australian jurisdictions, this population still remain at risk of, or experience, unnecessary medical interventions, often provided without their consent. Such interventions have been recognised as human rights abuses.
In response, the Australian Capital Territory (ACT) is implementing new legislation and regulation to fulfil human rights recommendations and oversee medical interventions on people with IVSCs who are unable to personally consent to treatment. Necessitated by the failure of medicine to self-regulate, the population primarily impacted includes infants, children and adolescents with IVSCs, plus some adults. The ACT reforms are accompanied by significant investment in psychosocial support.
While these developments in the ACT provide a new benchmark, more needs to be done. The limited data on the experiences of infants, children and carers have typically come from small case studies subject to confirmation bias, where surgeons and endocrinologists study their own patients, in line with their own values and interests. Human rights and community institutions argue that many existing norms and practices are harmful or inadequate. IVSC community organisations have expressed different, rights-based, research priorities, addressed by reforms in the ACT; recommendations 1-5, 7-10, 12 of the 2021 Australian Human Rights Commission report.
Pervasive data gaps exist in relation to the physical and mental health of adolescents and adults with IVSCs. Existing psychosocial and peer supports have been inadequately resourced and utilised. And national bioethical frameworks for care of people with IVSCs have been developed without input from people with lived experience or psychosocial professionals.
Project Structure
Interconnect has been developed to have three distinct work packages that address these issues.