This project is about making genetic health care better for all Australians.
Why this work is important
People with intellectual disability have reported that they often:
- feel unsafe in health care settings
- do not understand the information provided
- are not listened to
- and are excluded from decisions about their genomic health care
The project aims to address these challenges by promoting genomic health care that is respectful, accessible, and inclusive.
Project activities
Since 2023, the team has been collaborating with:
- people with intellectual disability across all support needs (including Aboriginal and Torres Strait Islander communities)
- families and support people
- health care workers
Participants have shared experiences that highlight what makes genomic health care:
- difficult or easy to navigate
- helpful or unhelpful
- empowering or exclusionary
What is being developed
Through co‑design, the project is developing:
- A national plan for respectful genomic health care
- Resources for people with intellectual disability, families, support people, and clinicians
- Guidance that supports health professionals in enabling informed choice and autonomy
Project foundations
This work is supported by a multidisciplinary team of researchers, clinicians, disability advocates, community partners, and advisory groups, and is funded by the National Health and Medical Research Council.