GeneEQUAL is an interdisciplinary research program based at UNSW Sydney, co-led by UNSW Disability Innovation Institute Associate Dr Elizabeth Emma Palmer (UNSW Medicine & Health), Institute Academic Lead Research Professor Iva Strnadová and Institute Director Professor Jackie Leach Scully. The aim of the GeneEQUAL research program is to create a more inclusive, person-centred and respectful genetic health care approach for people with intellectual disability.
The GeneEQUAL research program started in 2019 with seed funding from the Institute. This first stage resulted in a systematic literature review published in the highly-regarded journal Genetics in Medicine. This review highlighted major gaps in our understanding of the opinions, experiences, and preferences of people with intellectual disability regarding genetic counselling and testing. The paper set the stage for the GeneEQUAL program, as it clarified that there is an urgent need for research to help co-design a more inclusive genomic model of care to address this failure in healthcare accessibility and equity.
Subsequently, the NSW Ministry of Health funded GeneEQUAL for two years. In the first year, the inclusive research team of co-researchers Julie Loblinzk OAM, Adjunct Lecturer at UNSW and Board Member of Self Advocacy Sydney, and Skie Sarfaraz, Team Leader for the Leadership Peer Support program at Self-Advocacy Sydney, as well as researchers from across health, special education, and ethics, interviewed people with intellectual disability who had experienced genetic health care in NSW. This lead to a report for NSW Health with recommendations for improving genetic health care; the Easy Read report can be found on the GeneEQUAL website. This also resulted in a publication in the prestigious European Journal of Human Genetics. In the second year, the GeneEQUAL team led the co-production of the world’s first Easy Read Genetic Health Care booklets and videos illustrating both poor and better practice, the better practice scenarios aligning with the GeneEQUAL recommendations. Booklets and videos will be available soon on the NSW Health Centre for Genetics Education website.
These resources have been internationally celebrated as innovative examples of the importance of co-production in action. The GeneEQUAL team were interviewed in an international podcast talking about the importance of language and reasonable adjustments, and have been invited to present their work at national and international conferences. In the latest stage of progress, GeneEQUAL has been established as a 5-year national program of research with $1.6 million funding from the National Health and Medical Research Council (NHMRC).
"The GeneEQUAL team are indebted to the Institute for believing in the importance of this inclusive, world-leading research program, and supporting with funding both for our initial literature review and more recently to improve the accessibility of our website, as well as offering critical guidance on how to do co-production and inclusive research well." Dr Elizabeth Emma Palmer
This video shows how co-production not only resulted in great resources but has been an empowering process for the co-researchers with intellectual disability too, with impacts far beyond genetic health care.