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Our publications
Health care
Building genetic healthcare together: an Australian co-production three-phase mixed-methods research protocol with people with intellectual disabilityBMJ Open
Iva Strnadová, Michelle Tso, Julie Loblinzk Refalo, Natalie Roberts, Joanne Danker, Skie Sarfaraz, Jackie Boyle, Bronwyn Terril, Celia Halliburton, Claudia Pantoja Mardones, Sarah Hayes, Sam Hurd, Caitlin King, Kristine Barlow-Stewart, Elizabeth Evans, Helen Leonard, Helen Mar Fan, Jonathan Rodgers, Yvette Vella, Julie McGaughran, Stephanie Best, Erin Turbitt, Jackie Leach Scully, Greg Pratt, Elizabeth Palmer.
“Building genetic healthcare together” sets out our three-phase, co-produced plan to make genetic healthcare more inclusive, person-centred and respectful for people with intellectual disability. Co-researchers with intellectual disability lead the process throughout every step. It is an open access article, so anyone can read it!
Shared Decision-Making for Genetic Tests With Children and Young People With Intellectual Disability: Considerations for Inclusive, Person-Centred, and Respectful ApproachesJournal of Paediatrics and Child Health
This article is about shared decision-making. Shared decision-making means health care workers and patients making decisions together. People with intellectual disability have the right to be involved in choices about their health care. We think health care workers should provide good information, make reasonable adjustments, and support people to make their own choices. We hope this will make health care more inclusive, person-centred, and respectful.
“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 disabilityGenetics in Medicine
Iva Strnadová, Manjekah Dunn, Chloe Molnar, Julie Loblinzk Refalo, Jackie Leach Scully, Joanne Danker, Michelle Tso, Tiffany Qing Lim, Yasmin Cathcart-King, Karen-Maia Jackaman, Sarah Hayes, Sierra Angelina Willow, Jackie Boyle, Jennifer Hansen, Skie Sarfaraz, Caroline Basckin, Celia Halliburton, Thulasee Sri Ganeshan, Edwina K. Middleton, Bronwyn Terrill, Elizabeth Emma Palmer
Published in a medical journal, this article 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.
The need for co-educators to drive a new model of inclusive, person-centred and respectful co-healthcare with people with intellectual disabilityFrontiers in Psychiatry
Chloe Molnar, Iva Strnadová, Manjekah Dunn, Julie Loblinzk, Skie Sarfaraz, Yasmin Cathcart-King, Michelle Tso, Joanne Danker, Sarah Hayes, Sierra Angelina Willow, Jennifer Hansen, Tiffany Qing Lim, Jackie Boyle, Bronwyn Terrill, Jackie Leach Scully and Elizabeth Emma Palmer
People with intellectual disability have the right to good health care. But sometimes health care workers do not understand their needs or do not include them in decisions about their health. We think health care workers need to learn how to provide better care. We think people with intellectual disability should help teach health care workers. We hope this will make health care more:
Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature reviewBMJ Quality & Safety
Manjekah Dunn, Iva Strnadová, Jackie Leach Scully, Jennifer Hansen, Julie Loblinzk, Skie Sarfaraz, Chloe Molnar, Elizabeth Emma Palmer
People with intellectual disability have the right to make choices about their health care. To make these choices, they need information they can understand and support when they need it. This article is about informed consent for health care. Informed consent means having the information you need to make health care choices. We think people with intellectual disability must get:
the right information
information in accessible formats
support with health care choices
This article tells us that we need to do more work to improve health care choices and informed consent for people with intellectual disability.
“I am not a number!” Opinions and preferences of people with intellectual disability about genetic healthcareEuropean Journal of Human Genetics
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!
The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic reviewGenetics in Medicine
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.
Developing genetic literacy in high school students with intellectual disability: Teachers’ experiences and perspectivesEuropean Journal of Human Genetics
Karen-Maia Jackaman, Iva Strnadová, Sierra Angelina Willow, Julie Loblinzk Refalo, Jackie Leach Scully, Elizabeth Emma Palmer & Bronwyn Terrill
Karen-Maia Jackaman’s research examines how genetics education can be made more inclusive for students with intellectual disability—a group that has expressed a strong desire to better understand their own health and potential genetic conditions. Her study involved interviews and a focus group with fifteen teachers who deliver genetics content in inclusive classrooms. The analysis revealed three interconnected needs:
Pedagogical approaches and curriculum adaptations that genuinely support diverse learners
Targeted professional development and high-quality resources for teachers
A whole-school commitment to building genetic literacy among students, staff, and families
Jackaman’s findings point to a clear recommendation: the development of accessible, multimodal online resources and sustained professional learning to empower educators and strengthen genetic literacy across the school community.
“It was up to me to be curious”: perceptions and experiences of students with intellectual disability on genetics and health educationEuropean Journal of Human Genetics
Jennifer Hansen, Iva Strnadová, Joanne Danker, Karen-Maia Jackaman, Julie Loblinzk Refalo OAM, Skie Sarfaraz, Jackie Leach Scully, Jackie Boyle, Bronwyn Terrill & Elizabeth Emma Palmer
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.
People with intellectual disability have reported that they often:
feel unsafe in health care settings
do not understand the information provided
are not listened to
and are excluded from decisions about their genomic health care
The project aims to address these challenges by promoting genomic health care that is respectful, accessible, and inclusive.
Project activities
Since 2023, the team has been collaborating with:
people with intellectual disability across all support needs (including Aboriginal and Torres Strait Islander communities)
families and support people
health care workers
Participants have shared experiences that highlight what makes genomic health care:
difficult or easy to navigate
helpful or unhelpful
empowering or exclusionary
What is being developed
Through co-design, the project is developing:
A national plan for respectful genomic health care
Resources for people with intellectual disability, families, support people, and clinicians
Guidance that supports health professionals in enabling informed choice and autonomy
Project foundations
This work is supported by a multidisciplinary team of researchers, clinicians, disability advocates, community partners, and advisory groups, and is funded by the National Health and Medical Research Council.
GeneEQUAL is made with people, not just about people.
People with intellectual disability are part of our team. So are families, doctors, genetic counsellors, and researchers. Everyone’s knowledge matters. People who live with intellectual disability are the experts on their own lives.
We work together at every step. Our partners help decide what we study, check that our words are clear, and tell us what to change.
We make our information easy to understand. We use Easy Read, plain language, and pictures. We give people the time they need.
We keep learning how to do this better, together.
Co-researchers
Co-researchers are people with intellectual disability who work on the project as part of the team.
They are not just people we ask questions to. They help plan the research, check our materials, and share their ideas.
They are paid for their work, like any other team member. Their knowledge comes from living it.
Advisory Board
Our Advisory Board helps guide the whole project.
The Board includes people with intellectual disability, family members, doctors, and researchers.
They meet with us to look at our work, give advice, and help us make good decisions.
Community Engagement Groups
These are groups of people from the community who share their views with us.
They tell us what matters to them about genetic healthcare.
Their feedback helps us make sure our work is useful and respectful for real people.
Family members and supporters
Families and supporters are an important part of our team.
They share what they know from supporting someone with intellectual disability.
They help us understand the whole picture, not just the medical side.
Researchers and clinicians
Our team also includes researchers, doctors, and genetic counsellors.
They bring their training and experience in genetics and health.
They work alongside everyone else as equal partners — no one voice matters more than another.
