emerging trend in many scientific fields, which has been uplifted by genetic databases and better analytics tools. A study led by University of New South Wales (UNSW) hopes to make genetic tests and genetic counselling for individuals with intellectual disability more accessible and impartial.
GeneEQUAL, a multibranch project led by the UNSW to produce a more inclusive genomic healthcare for individuals with intellectual disability have been granted $1.6 million (approximately 1 million US dollars) from the National Health and Medical Research Council.
GeneEQUAL is to produce resources and education that will assist health professionals to implement genomics health care to their practice, that’s respectful, suitably paced and trauma-informed. It will also co-design information and psychosocial support facilities involving persons with intellectual disability and their families taking genetic testing, that will guide them in making better decisions and get the advantages from genetic diagnoses.
Over 400,000 Australians have intellectual disability. Genomics has taken our understanding of the causes of intellectual disability to the next level and giving better physical and mental health outcomes. However, individuals with intellectual disability regularly miss out on these options because of inequitable and non-inclusive care.
Chief investigator Dr Elizabeth Emma Palmer of UNSW Medicine & Health stated that GeneEQUAL project will make innovations by involving co-researchers with intellectual disability. The opinions and preferences of individuals with intellectual disability, including those from indigenous communities, as well as their care givers and families, will also be incorporated into the study from the beginning.
Dr Palmer further explained: “This is a true research partnership with people with intellectual disability. Designing the research program this way was key to us, specifically so that the project could address the critical health inequities for people with intellectual disability not only in Australia but globally.”
