Have a say project

This project was about helping doctors explain genetic health care to people with intellectual disability in NSW.

What was the project about? 

GeneEQUAL wants to make genetic health care better for everyone.  

We started by talking to people with intellectual disability in New South Wales, Australia.  

We asked them about genetic health care:  

• what works well  

• what can be better? 

We asked them what needs to change. 

What did we do together? 

First we talked to people who  

• have learning and intellectual disability  

• live in NSW  

• had a genetic test or talked to a genomic health care team 

We talked to  

• 19 people with learning and intellectual disability  

• 9 support people, like parents, grandparents, and partners 

We talked about what we heard with our NSW Advisory Board 

What did we find out together? 

There were 5 main things that we heard from people with intellectual disability.  

  1. access to genetic healthcare services is not equal: there are several barriers to the informed consent process 
  1. people with intellectual had different experiences: some had good experiences, some had negative experiences and felt frustration, exclusion and fear; 
  1. genetic counselling and diagnoses can have a very big impact: people need lots of support and resources 
  1. people with intellectual disability have had a lot of trauma. Some people found genetic health care was also traumatic.  
  1. people had recommendations for a more respectful and inclusive model of genetic healthcare. 

You can read an Easy Read of this project here:

Easy Read Inclusive Care Report

We also wrote a paper about this project.  

It is on our website for health professionals all over the world. I am not a number!

Here is a link to the Easy Read summary of the article:  I am not a number! Easy Read

What did we make together 

We took the top recommendations from this project and made the GeneEQUAL Toolkit for health professionals. 

The GeneEQUAL Toolkit Final Report – GeneEQUAL

This includes advice on how to do health care that is 

  • respectful 
  • inclusive and 
  • accessible. 

The Toolkit was co-designed with people with intellectual disability and health professionals. 

It includes   

  1. Advice for health professionals on the Centre for Genetics Education website. 
  1. Information on how we made the toolkit. 
  1. Our health videos – which show how to do good health care. 
  1. Our Easy Read genetics booklets. 

How you can get involved? 

Please check out our Toolkit and share with your friends, family and health care professionals.  GeneEQUAL Toolkit  

If you are a health professional, please let us know what you think by doing our short survey. 

You can download the full toolkit here. GeneEQUAL Toolkit PDF

How was this project funded?  

The project was funded by NSW Health.