This project is about
- helping people with intellectual disability understand genetic health care and
- make a choice about whether they want to get a genetic test.
This is important for informed consent for genetic testing.
Informed consent means people
- are supported to understand genetic testing and
- make a choice that is right for them.
NSW Health provided funding and support for this project.
The GeneEQUAL research team worked together with
- people with intellectual disability
- experts and advisors
- health care workers.
We listened to what people thought and wanted
- to help them make a choice about genetic health care.
Together we created genetic health care resources including:
More advice for health professionals about supporting shared decision-making.
10 videos showing Millie’s genetic health care journey.
3 Easy Read booklets about
- Millie’s genetic health care journey
and
- making a choice about genetic testing.
A tailorable decision aid tool to help make a health care choice about genetic testing.
We added these new resources to the GeneEQUAL Toolkit.
Please have a look and share with your health professionals.