The University of Queensland is among a multi-institutional research team that has been awarded $5 million in federal government funding to help create a safer and better future for people with innate variations in sex characteristics (IVSC).
The historic grant from the Medical Research Future Fund is believed to be the largest amount awarded to a research project led by people with IVSC worldwide.
IVSC, sometimes referred to as intersex or differences of sex development, is an umbrella term used to describe traits in people born with anatomical, chromosomal and hormonal variations of sex characteristics that do not align with social or medical norms for male or female bodies.
Dr Ingrid Rowlands from the School of Public Health is a Chief Investigator on the project.
She said she hoped the research would contribute to a future where people with IVSC live free of shame, stigma and pain.
“People born with variations in their sex characteristics can feel considerable shame about their bodies, and it can be an incredibly isolating journey,” she said.
“We need to support children, their families, and adults born with variations so that they have access to appropriate information and psychological care when they are diagnosed and feel safe and supported when they access healthcare.”
The project will be conducted by a national consortium of researchers, community groups, and clinicians.
It will be led by researchers with lived experience of IVSC, including Dr Morgan Carpenter from University of Sydney, Dr Ingrid Rowlands from The University of Queensland and Bonnie Hart from University of Southern Queensland.
Dr Morgan Carpenter is the project lead at the University of Sydney and executive director of Intersex Human Rights Australia (IHRA).
He said the project would improve the health and wellbeing of people of all ages with IVSC and provide better support to people with IVSC and their families.
“People with innate variations of sex characteristics have health needs that must be addressed in a timely way across all life stages, and in ways that respect their human rights, values and preferences,” Dr Carpenter said.
“In most Australian jurisdictions, people in this population remain at risk of, or experience, unnecessary medical interventions, often pre-empting their ability to consent.”
The project has been funded through a grant of $4,991,065.94 from the Medical Research Future Fund over five years. It will be divided into three components:
- The development and evaluation of clinical and peer-led care models in Canberra Health Services’ new hospital-based psychosocial support service and the national InterLink peer-led service.
- A mixed-methods national survey to better understand the health and wellbeing needs and circumstances of adults and adolescents with IVSC.
- Development of new bioethical frameworks to support co-designed, ethically defensible models of care, facilitating timely access to appropriate healthcare across the lifespan.
The University of Sydney will lead the project, with collaborators including Intersex Human Rights Australia, Canberra Health Services, the University of Southern Queensland, The University of Queensland, Australian National University, UNSW, UTS, La Trobe University, the University of Western Australia, Telethon Kids Institute, the University of Canberra, Intersex Peer Support Australia, and A Gender Agenda.
