Hello everyone
We hope you have all been well during these difficult COVID-19 times.
We would like to tell you about our new project. It’s called GeneEQUAL.
We need to listen to people to intellectual disability so that we can make their health care better.
Doctors need to know how to make people with genetic conditions feel safe and respected
This project will show us how we can make genetic health care better.
What do we want to find out about this project?
We want to learn about what people with intellectual disabilities think about:
Genetic counselling
Genetic counselling means talking about why people have a health or learning difficulty.
Gene testing
Gene testing means a blood or spit test to help find out why people have a health or learning difficulty.
Who do we want to talk to?
We want to talk to anyone who
- lives in NSW
- has an intellectual disability
- has ever had a genetics test or seen a genetics doctor or counsellor
- is aged 18 years or older
What does taking part involve?
Taking part in the study will involve meeting Julie and me to talk. This will happen online (Zoom, Skype, Facetime, Teams) or via phone.
We will ask you about:
- What is was like to have genetic counselling or testing
- How you think genetic testing or counselling should be done
Who is doing this research?
We are conducting this research with Dr Emma Palmer
And Professor Jackie Leach Scully from the University of New South Wales.
Mrs Jackie Boyle from New South Wales Health.
And Suzanne Nevin from UNSW and Sydney Children’s Hospital.
What can you do to help us?
Please let other people know aobut this study
If you want to know more we would love to chat with you.
You can call Iva on 0426 959 172
Or email us at
i.strnadova@unsw.edu.au