Ground-breaking Indigenous genetic health project 'just had to happen'

Alfred Deakin Institute for Citizenship and Globalisation (ADI) researcher Professor Emma Kowal, describes a ground-breaking project aiming to improve genetic health services to Indigenous people in NT, WA and Qld as the project that had to happen

Now thanks to more than $1million in funding from the National Medical Health and Research Council($710,240) and the Lowitja Institute ($382, 472) and the support of partnerships with the Machado Joseph Disease Foundation, the Northern Territory Department of Health, the Office of Population Genomics (WA), and Genetic Services of Western Australia.

“Indigenous people have little to no access to genetic health services so the project will work on what specific services are needed and what issues there might be,” Professor Kowal explained.

“Genetic health services can include screening for inherited cancers, diseases causes by a single gene like Huntingdon’s disease and Cystic Fibrosis, development disorders and rare diseases.”

The project pairs the Indigenous genomics expertise of Professor Kowal, with the provision of health services and equity expertise of Professor Margaret Kelaher from Melbourne University School of Population and Global Health and experts in clinical genetics and Indigenous health from around the country.

Professor Yin Paradies from ADI is also part of the project team.

“In general, Indigenous people have poor access to health services and over the last few decades the core focus has rightly been increasing access to high quality primary health care,” Professor Kowal said.

“But over the last decade or so there has been interest in how best to provide the next level of services such as specialist health care, allied health, palliative care and dental care to Indigenous people across the country, and particularly in remote communities where there are unique challenges. Genetic health services is an area that nobody had looked at.

“This is the project that just had to happen.

Professor Kowal said the genesis of the project stemmed from the supervision of a Master’s thesis in Genetic Counselling which required interviewing the few genetic health professionals that had experience working with Indigenous people.

“This was the very first research in the area and paved the way for these current projects. I also led a pilot study looking at how to assess the level of genetic knowledge in Indigenous populations so we can tell if culturally-specific genetic education tools are working,” she said.

Professor Kowal, who is also Deputy Director of the National Centre for Indigenous Genomics at the Australian National University, said the current projects would investigate the best way to provide genetic health services to Indigenous people living in the Northern Territory, Queensland and Western Australia.

“There’s been different models tried and this project takes a retrospective look at the work that has been done and what needs to happen in the future,” she said.

“The project will also provide training to clinical geneticists, genetic counsellors and Aboriginal Health Workers working in the Northern Territory, Western Australia and Queensland to support and improve their work”

The project will be led by The University of Melbourne and the research team for the projects also includes Professor Ravi Savarirayan, Murdoch Children’s Research Institute, Associate Professor Gail Garvey, Menzies School of Health Research, Associate Professor Gareth Baynam, King Edward Memorial Hospital for Women, Professor Hugh Dawkins, Murdoch University, Dr Misty Jenkins, Peter MacCallum Cancer Centre.