Parent/carer of a student or young person with intellectual disability

Are you a parent/carer of a student or a young adult with intellectual disability living in Australia?

We want to know:

  • What are your thoughts on providing genetics and health education to your child?
  • What kinds of support in learning about genetic content do you find most helpful for your child?

If you are interested please contact

Chia Roung Chen

0424 357 5510424

chia-roung.chen@unsw.edu.au

Jennifer Hansen

0400 370 392

jennifer.hansen@unsw.edu.au

PDF file

Informed consent is important in health care for people with intellectual disability

This is an article written by a team of three people, including a co-researcher.

Johnathon Ding and his team read our GeneEQUAL article on informed consent in health care.

Johnathon Ding and his team thought our article was important in improving health care for people with intellectual disability.

Read what Johnathon Ding and his team said about our GeneEQUAL article on informed consent in health care.

Click the link below.

It is up to healthcare professionals to talk to us in a way that we can understand: informed consent processes in people with an intellectual disability

New study for health care professionals

We want to talk to health care professionals (including medical students) who have worked with people with intellectual disability.

We want to talk to them about

  • their experiences delivering health care to people with intellectual disability
  • their experiences talking about genes and genetic testing with people with intellectual disability
  • their experience with delivering genetic health care to people with intellectual disability
  • what resources or changes to health care services could be better
  • what could be better

Please contact Dr Emma Palmer if you would like to take part in this study.

NameDr Elizabeth Emma Palmer
PositionCoordinating Chief investigator, Clinical Lecturer and Clinical Geneticist
Telephone(02) 9348 1601
Emailelizabeth.palmer@unsw.edu.au

To find out more, download the flyer below.

PDF file

‘They treat you like an it’: people with intellectual disability on seeing medical professionals

The GeneEQUAL team has published an article in The Conversation.

This article is about

  • GeneEQUAL’s last project
  • what people with intellectual disability told us
  • the resources we made
  • the importance of the voice of people with intellectual disability in health care

The Conversation Article Online

New study for people with intellectual disability

We want to talk to people with intellectual disability.

We want to talk to them about genetic health care

  • what is good
  • what is bad

We want to make genetic health care better for people with intellectual disability.

We would love to hear the experiences of:  

  • people with intellectual disability aged 12 and above  

You can be involved through  

  • an interview which can be face to face, online, or on the phone

The interviews last around 30 minutes to 1 hour. 

If you like you can bring a person you trust with you to the interview.

If you are interested or have any questions, you can contact  

Emma Palmer  

by email: elizabeth.palmer@unsw.edu.au  

by phone 02 9382 5583 

or

Iva Strnadová  

by email: i.strnadova@unsw.edu.au  

by phone: 0426 959 172 

Download the flyer below.

PDF file

New study for health care professionals about GeneEQUAL Toolkit

We want to hear from health care workers.

Tell us what you think about the GeneEQUAL Toolkit.

Our survey (linked to prize draws) is open.

It will close on the 23rd of November 2023.

Scan the QR code for more information

New study with families and support worker recruitment

We want to speak to family members and/or support people of children and adults with intellectual disability?

We want to learn about your experiences with genetic health care and health care with people with intellectual disability.

Together we can develop a better model of inclusive, person-centred and respectful genetic health care for people with intellectual disability.

Download the flyer below.

PDF file