An interdisciplinary project led by UNSW Sydney to create a more inclusive genomic healthcare approach for people with intellectual disabilities has received $1.6 million from the National Health and Medical Research Council (NHMRC).
GeneEQUAL develop resources and education to help healthcare professionals practice a new model of respectful, appropriately paced and trauma-informed genomic healthcare. It will also co-build information and psychosocial support resources for people with intellectual disabilities and their families undergoing genetic testing, to help them make more informed choices and benefit from genetic diagnoses.
Over 400,000 Australians have an intellectual disability. Genomics has revolutionized our understanding of the causes of intellectual disability and also offers better physical and mental health outcomes. However, people with intellectual disabilities often miss these opportunities due to inequitable and non-inclusive care.
Lead researcher Dr Elizabeth Emma Palmer of UNSW Medicine & Health said the GeneEQUAL project would break new ground by including co-researchers with intellectual disabilities. The opinions and preferences of people with intellectual disabilities, including Aboriginal and Torres Strait communities, and their carers and families, will also be incorporated into the research program from the outset.
“This is a real research partnership with people with intellectual disabilities. Designing the research program in this way was essential for us, particularly so that the project could address critical health inequities for people with intellectual disabilities, not just in Australia but around the world,” said Dr. Palmer.
The inclusive research model was championed by the UNSW Disability Innovation Institute (IUI). DIIU Director, Professor Jackie Leach Scully, and DIIU Senior Research Professor, Iva Strnadová, of UNSW Arts, Design and Architecture, are also part of GeneEQUAL’s lead research team.
Announcing the funding, Federal Health and Aged Care Minister Mark Butler said the awarded projects develop the evidence base for future policies, interventions and other initiatives aimed at improving the quality of life of people with intellectual disabilities.
“People with intellectual disabilities must have access to care that meets their needs and helps them lead healthy and active lives,” he said. “It’s so important that they, along with their families and caregivers, are involved in research that will find better ways to provide this care.”
The interdisciplinary research team includes Ms Julie Loblinzk from UNSW Arts, Design and Architecture and academics from the Peter MacCallum Cancer Centre, University of Technology Sydney, Royal Brisbane and Women’s Hospital and the Council of the Queensland Institute of MedicalResearch. The project also has multi-stakeholder partnerships with NSW Health, Australian Genomics and Rare Voices Australia, Self-Advocacy Sydney and the Council for Intellectual Disability.
The research program will convene community engagement groups that will have diverse representation by age, gender, Aboriginal and Torres Strait Islander heritage, ethnicity and location. The consultations will aim to better understand the patient journey, find and fill gaps in current resources, and create a roadmap for inclusive genetics services.