Resource type: Easy Read

Decision aid tool for genetic informed consent

GeneEQUAL made this decision aid tool.

A decision aid tool helps people make a choice that is right for them.

The decision aid tool can help people decide whether they

  • want to

or

  • do not want to

get a genetic test.

People with intellectual disability and health care workers can go through it together.

You can look at it

  • by yourself
  • with a support person
  • with a health care worker.

This decision aid tool is part of the GeneEQUAL Choices Project.

It was made together with

  • people with intellectual disability
  • health care workers
  • advisors and experts.
Booklet cover of the genetic testing decision aid tool

Your own booklet about genetic tests

This booklet is a personalised booklet.

This means you fill it in about you.

It can help you make a choice about a genetic test.

Millie’s journey booklets

You can follow Millie’s genetic health journey through the Easy Read booklets.

This can help you learn about what a genetic health care journey might look like.

GeneEQUAL co-produced these Easy Read booklets with

  • People with intellectual disability
  • Health care workersl

People with intellectual disability and health care workers can use these booklets to learn about Millie’s genetic testing journey and informed consent.

There are 3 booklets.

  1. Millie’s genetic health care story: Before a genetic test.
  2. Millie’s genetic health care story: Getting a genetic test.
  3. Making a choice about a genetic test.

You can download the booklets for free.

These booklets are part of the GeneEQUAL Choices Project.

Booklet cover of Millie's genetic health care story: Before a genetic test

Millie’s genetic health care story: Before a genetic test

This booklet is about Millie seeing her doctor.

They talk about

  • Millie’s health and
  • genetic health care.

This booklet is useful when someone

  • is starting to think about genetic testing
  • wants to know more about the process
  • is referred to see a specialist to talk about genetic testing.
Booklet cover of Millie's genetic health care story: Getting a genetic test

Millie’s genetic health care story: Getting a genetic test

This booklet is about Millie meeting a specialist.

  • to talk about genetic testing.

This booklet is useful when someone

  • is seeing a specialist to order genetic testing
  • wants to know what genetic testing is like
  • decides they want to get a genetic test.
Booklet cover of Millie's genetic health care story: Making a choice about a genetic test

Millie’s genetic health care story: Making a choice about a genetic test

This booklet is about making a choice about a genetic test.

It is about important things you need to know

  • to make a choice about getting a genetic test.

This is called informed consent.

This booklet is useful when someone

  • is making their own choice about genetic testing
  • is seeing a specialist to decide about genetic testing.

We also have an Easy Read decision aid tool

It is a booklet you can fill in together

  • with your health care worker
  • to help you make a choice about genetic testing.
Booklet cover of the genetic testing decision aid tool

Millie’s genetic health care story: Making a choice about a genetic test

This booklet is about making a choice about a genetic test.

It is about important things you need to know

  • to make a choice about getting a genetic test.

This is called informed consent.

This booklet is useful when someone

  • is making their own choice about genetic testing
  • is seeing a specialist to decide about genetic testing.

This decision aid tool is part of the GeneEQUAL Choices Project.

Publication: “All doctors should be trained in that”

We are excited to share our new research article.

It was published in a medical journal.

It is about the GeneEQUAL Toolkit.

We asked people with intellectual disability and health care professionals about the Toolkit.

This article is about what they told us.

Click here to read our article: “All doctors should be trained in that”: The coproduction and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic health care for people with intellectual disability – ScienceDirect

PDF file

Publication: The need for co-healthcare with people with intellectual disability

We are excited to share our new research article.

It was published in a medical magazine.

It is about how health care workers do not always give good health care to people with intellectual disability.

We think that health care workers need to learn how to give good health care. 

We think that people with intellectual disability should help teach health care workers.

We hope this will make health care more

  • inclusive,
  • person-centred and
  • respectful.  

Click the link to read our article The need for co-educators to drive a new model of inclusive, person-centred and respectful co-healthcare with people with intellectual disability

Download our Easy Read article here

PDF file

Report: The GeneEQUAL Toolkit Final Report

This booklet is about the GeneEQUAL Toolkit and what

  • people with intellectual disability
  • health care workers

think about it.

This booklet is also about what people say

  • GeneEQUAL should work on next

You can find out more on the Centre for Genetics Education Website

Please click the link below to the PDF

PDF file

Publication: Health care choices for people with intellectual disability

We are excited to share our new research article.

It is about informed consent for health care.

Informed consent means having information to make health care choices.

Our article was published in a medical magazine.

We hope lots of health care workers read it.

We think people with intellectual disability must get

  • the right information
  • support 

with health care choices.

This article tells us we need to do 

  • more work to improve health care choices

Here is the link to the article

Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review

Click here for the Easy Read version

PDF file

GeneEQUAL toolkit

The GeneEQUAL team has made a toolkit for health professionals.

This includes advice on how to do health care that is

  • respectful
  • inclusive and
  • accessible.

The Educational Package 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.

Please have a look and share with your health professionals.  

Anyone can also let us know what they think.

We spoke to people with intellectual disability and health care workers.

They told us what they think about the Toolkit.

We listened to them. We then wrote an article about what they said.

If you would like to read the article, click here: Publication: “All doctors should be trained in that”

Download the full toolkit here

PDF file

Teenager sitting on couch with poodle and using a laptop

Our Easy Read Health Booklets

GeneEQUAL co-produced Easy Read booklets  

  • with people with intellectual disability.  

There are 6 booklets 

  1. About genetic health care 
  2. Genes and genetic conditions   
  3. How to make a genetics appointment  
  4. Get ready to go to the genetic clinic  
  5. Tips about genetic health care
  6. What is research? 

We hope they will help people  

  • learn more about genetic health care 
  • decide if they want to go to a genetic clinic  

You can download the booklets for free by clicking each link.  

If you want us to send you a booklet in the post let us know. 

You can find our contact details on our Connect page.

Please share with health professionals you know. Please also ask them to do this quick survey.

You can also let the GeneEQUAL team know what you think.

Cover of booklet 1, entitled About Genetic Health Care

About genetic health care

This booklet explains what genetic health care is.

Cover of booklet 2, entitled Genes and Genetic Conditions

Genes and genetic conditions

This booklet explains what genes and genetic conditions are and can be used as part of genetic counselling.

Cover of booklet 3, entitled Making a Genetic Appointment

Making a genetic appointment

This booklet is designed to help people with intellectual disability and their support people make a genetic clinic appointment.

Cover of booklet 4, entitled Get Ready to Go to The Genetic Clinic

Get ready to go to the genetic clinic

This booklet can be shared with a person with intellectual disability before a clinic appointment. It has space for including details of the appointment.

Cover of booklet 5, entitled Tips About Genetic Health Care

Tips about genetic health care

This booklet provides information about genetic clinics, including advice on the difference between public and private clinics and healthcare rights.

Cover of Easy Read flyer called What is Research?

What is research?

This booklet explains what research means.

“I am not a number!” Opinions and preferences of people with intellectual disability about genetic healthcare

Published January 20 2023 in European Journal of Human Genetics

Authors: Iva Strnadová, Julie Loblinzk, Jackie Leach Scully, Joanne Danker, Michelle Tso, Karen-Maia Jackaman, Manjekah Dunn, Sierra Angelina Willow, Skie Sarfaraz, Vanessa Fitzgerald, Jackie Boyle and Elizabeth Emma Palmer

The GeneEQUAL team share how people with intellectual disability have experienced genetic health care. They suggest some ways to make genetic health care better.

The paper is on a website that is seen by health professionals all over the world!

“I am not a number!” Article

Read the Easy Read version here

PDF file

Easy Read Report: GeneEQUAL study

This is the Easy Read Report of the GeneEQUAL study findings.  

It shares:

  • what the GeneEQUAL project is 
  • what people told us 
  • and what we recommend.

The study was funded by NSW Ministry of Health.

PDF file, 2.4Mb

Cover of the GeneEQUAL study findings.