Morgan Carpenter

I’m delighted to announce that I have led a successful bid for $5 million in funding from the Medical Research Future Fund. The project aims to improve the health and wellbeing of people of all ages with innate variations of sex characteristics (intersex variations/differences of sex development).

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).

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. – Dr Morgan Carpenter

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. – Ms Bonnie Hart

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. – Dr Ingrid Rowlands

Find out more in the announcement of 4 April 2024 on the University of Sydney website.