Publication: “It was up to me to be curious”

The GeneEQUAL team are proud to share our latest open access publication in the European Journal of Human Genetics:

“It was up to me to be curious”: perceptions and experiences of students with intellectual disability on genetics and health education.

Led by Jennifer Hansen, this study explores how students with intellectual disability experience learning about genetics and health at school.

Key findings include:

• Many students reported limited or no teaching about genetics
• Health literacy was not consistently addressed
• Students felt underprepared to make informed healthcare decisions
• Participants identified practical recommendations to improve education

The findings highlight the importance of accessible, inclusive approaches to genetics and health education, and the value of incorporating student perspectives into curriculum design and policy discussions.

You can read the article by clicking here.

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

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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

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“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

Publication: Experiences of genetic testing and genetic medicine

Published December 9 2021 in Genetics in Medicine

Authors: Iva Strnadová, Suzanne M. Nevin, Jackie Leach Scully and Elizabeth E. Palmer

The GeneEQUAL team looked at what other people said about the experiences of people with intellectual disability who had seen a genetic health care team.

They found that people with intellectual disability have not been properly listened to.

This study led us to start the GeneEQUAL project.

View the publication