Oral Presentation Lowitja Institute International Indigenous Health and Wellbeing Conference 2016

Co-creating an equitable future: Developing models to ensure that Aboriginal and Torres Strait Islander communities benefit from genetic research and health services (#104)

Margaret Kelaher 1 , Emma Kowal 2 , Ravi Savarirayan 3 , Gail Garvey 4 , Azure Hermes 5 , Elizabeth Massey 6 , Gareth Baynam 7 , Hugh Dawkins 8 , Misty Jenkins 9 , Yin Paradies 10 , Glenn Pearson 11
  1. University of Melbourne, Melbourne, VIC, Australia
  2. Deakin University, Melbourne, VIC, Australia
  3. Victorian Clinical Genetics Service, Melbourne, VIC, Australia
  4. Menzies Institute of Health Research, Brisbane, QLD, Australia
  5. National Centre for Indigenous Genomics, Canberra, ACT, Australia
  6. Machado Joseph Foundation, Alyangula, NT, Australia
  7. Genetic Services of Western Australia, Perth, WA, Australia
  8. Office of Population Health Genomics, Perth, WA, Australia
  9. Walter and Eliza Hall Institute of Medical Research (WEHI), Melbourne, VIC, Australia
  10. Deakin University, Melbourne, VIC, Australia
  11. Telethon Institute, Perth, WA, Australia

Clinical genetic health services are playing an increasingly important role in improving human health. Aboriginal and Torres Strait Islander people are underrepresented in such services despite having higher prevalence of a number of genetically determined conditions and evidence of willingness to access these services. There are two key barriers to improving the benefits associated with clinical genetic services for Aboriginal and Torres Strait Islander people; a lack of baseline genetic data to inform diagnoses and a lack of accessible appropriate services. In this panel we will discuss a number of approaches to co-creating appropriate and respectful ways of ensuring that Aboriginal and Torres Strait Islander people benefit from increased genetic knowledge. The panel will focus on three key programs including the:

  • National Centre for Indigenous Genomics (NCIG) which aims to establish a national resource, under Indigenous governance, for appropriate and respectful genetic and genomic research that will benefit Indigenous Australians;
  • Equity in Genetic Health Services (EGHS) project, which will inform the development of effective models of genetic health service and the development of training resources to support these approaches;
  • Machado Joseph Foundation, a charity which aims to improve quality of life for Indigenous Australians and their families living with┬áMachado Joseph Disease in Arnhem Land and beyond.

The panel will identify key issues in clinical genetics, current approaches and how they are developed, and opportunities to co-create resources and services to better meet the needs of Aboriginal and Torres Strait Islander Australians.