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Improving the physical and mental health of people born with innate variations of sex characteristics

Project Member(s): Kennedy, A.

Funding or Partner Organisation: National Health & Medical Research Council (Medical Research Future Fund)
National Health & Medical Research Council (Medical Research Future Fund)

Start year: 2024

Summary: People with innate variations of sex characteristics (‘IVSCs’) have health needs that must be addressed in a timely way across all life stages, in ways that respect their rights and personal values and preferences. However, in most Australian jurisdictions, this population still risk or experience unnecessary medical interventions, often provided without their consent. Such interventions have been recognised as human rights abuses (Australian Human Rights Commission, 2021). In response, one Australian jurisdiction - the ACT - is implementing new regulations to oversee medical interventions on people with IVSCs who are unable to personally consent to treatment. While developments in the ACT are welcome, more needs to be done. National bioethical frameworks for care of people with IVSCs have been developed without input from people with lived experience or psychosocial professionals. A lack of longitudinal research has led to data gaps on physical and mental health issues affecting adolescents and adults with IVSCs. This project will generate new approaches and knowledge, answering the following questions: How should clinical and IVSC peer-led care adapt to community and human rights expectations and new regulatory norms to improve physical and mental health outcomes? How can new legal and resourcing developments optimise health outcomes for children, adolescents, and adults with IVSCs, their peers and parents, and clinicians? We will evaluate and scale-up clinical and IVSC peer-led psychosocial support programs for individuals and families. We will develop new bioethical approaches that centre lived experience, and psychosocial and peer support. We will pilot and implement a new population survey to increase understanding of those with IVSCs, and make recommendations for clinical and community health services. The survey will form the basis for a future series of population studies.

FOR Codes: Evaluation of health and support services, Bioethics, Specific population health (excl. Indigenous health), Health counselling , Health equity, Medical and health law