Historic grant to improve intersex people's health and wellbeing
A multi-institutional research team has been awarded $5M 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.
The project will be conducted by a national consortium of researchers, community groups, and clinicians led by researchers with lived experience of IVSC: Dr Morgan Carpenter (University of Sydney), Bonnie Hart (University of Southern Queensland), and Dr Ingrid Rowlands (The University of Queensland).
Dr 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.
“In most Australian jurisdictions, people in this population remain at risk of, or experience, unnecessary medical interventions, often pre-empting their ability to consent.”
In 2023, the ACT became the first Australian state or territory to enact new legislation preventing contested medical interventions on people with IVSC without informed consent.
Canberra Health Services, a project partner, runs public hospital and health care services in the ACT, including a new paediatric psychosocial support service for people with IVSC.
Intersex advocates and LGBTQIA+ groups hope other jurisdictions will introduce similar reforms and services.
However, Dr Carpenter said more needs to be done.
“We want to drive improvements to healthcare and its management, ensure that health and wellbeing needs are effectively met in a timely way, and ensure that treatment practices respect fundamental human rights norms and community expectations,” he said.
The project aims to fill gaps in knowledge about the health and wellbeing of people with IVSC through a landmark national survey.
Ms Hart, a Deputy Executive Director at IHRA, said the project would also evaluate and strengthen Australia’s new community and hospital centres of expertise in psychosocial support and develop new ethically defensible bioethical approaches to treating people with IVSC.
Understanding how clinical and community-based health initiatives link together will help ensure world-leading rights-based models of care and positive psychosocial outcomes for intersex people of all ages in addition to the parents of young people with intersex variations.
Dr Rowlands 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 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.
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