“Nothing about us, without us”
National Indigenous genomics initiative launch
Sunday 16 July 2023 10 am
Melbourne Convention and Exhibition Centre
A national centre launched today will bring the benefits of genomics medicine to Indigenous Australians, who still have a life expectancy 10 years less that the general population.
“80 per cent of this life expectancy gap is due to chronic disease,” says Alex Brown, Lead of The Australian Alliance for Indigenous Genomics (ALIGN) and Professor of Indigenous Genomics at the Telethon Kids Institute and the Australian National University. Alex is a member of the Yuin Nation and grew on the NSW South Coast.
“Australia is on the cusp of a new era in personalised medicine that will bring deeper insights into common diseases like heart disease, diabetes, and cancer,” he says.
“ALIGN is a commitment designed by Indigenous people, for Indigenous people, to offer the benefit of genomic medicine to all,” he says.
“Its basic premise is ‘nothing about us, without us.’ This is critical to ensure equity is achieved in health outcomes,” he says.
ALIGN will be governed by an Indigenous Council to ensure every ‘gift’ of DNA provided by Indigenous Australians is treated with respect.
- A team at Telethon Kids Institute Adelaide will oversee the scientific and operational coordination of the alliance teams
- Canberra researchers will lead a team to identify and understand genomes of Indigenous Australians to better deliver precision health care to them.
- NSW researchers will use genomic medicine to identify new and personalised treatments for Indigenous Australians with type 2 diabetes, heart disease and cancer.
- A Brisbane team will explore health service and system needs that support genomic medicine to determine which treatments are best suited to Indigenous patients
- A Victorian team of scientists will use genomic medicine to better understand and treat immune-related disorders in Indigenous Australians.
- A Perth team will use advances in genomic medicine to continue and strengthen their work to unlock better health outcomes for an estimated 40,000 Indigenous Australians suffering from rare diseases.
ALIGN media contact: Keryn McKinnon | Telethon Kids Institute | 0448 294 375
Congress media contact: Niall Byrne, niall@scienceinpublic.com.au, 0417-131-977, or Sarah Brooker, sarah@scienceinpublic.com.au, 0413-332-489.
Media releases at https://www.scienceinpublic.com.au/genetics
Read on for comments from around the country
Comments from around the country
Vic: Associate Professor Misty Jenkins AO, Gunditjmara woman and Immunology Lab Head at WEHI (Walter and Eliza Hall Institute) said ALIGN represented a crucial step toward addressing the health disparities faced by Indigenous Australians.
“By harnessing the power of immunogenomics and working together with Indigenous communities, we can unlock a deeper understanding of immune-related disorders and ensure that our people receive equitable access to advanced healthcare solutions,” Associate Professor Jenkins said.
NSW: Professor Stephen Simpson, Charles Perkins Centre Academic Director, said delivering precision medicine solutions tailored to the needs of Aboriginal and Torres Strait Islander communities required working with communities to integrate new understanding from genomics with the many other health, social, cultural and environmental factors that contribute to health and wellbeing.
Qld: Greg Pratt, Manager of Research and Evidence at the Queensland Aboriginal and Islander Health Council said equitable access to genetic healthcare was contingent on leadership from the primary health service sector; the industry leads who are the Aboriginal and Torres Strait Islander Community Controlled Health Service Organisations.
“Partnerships built on trust and mutual respect between tertiary genetic testing and healthcare services and primary health providers (ATSICCHO) form the basis for real world interactions, coordinated care and quality patient experiences that reflect a human right to equitable access to quality healthcare,” Mr Pratt said.
ACT: Dr Hardip Patel, National Centre for Indigenous Genomics Bioinformatics Lead at ANU, said long-term continuous partnerships with Indigenous communities for genomics research would facilitate the transition of genomics medicine from diagnosis and treatment to predictive and preventative.WA: Professor Gareth Baynam, Head of the WA Register of Developmental Anomalies, said stakeholders in WA had been partnering with Aboriginal health leaders and communities to unlock the power of genomics for people living with rare diseases for more than a decade. “Building on this through ALIGN will help take this work to the next level,” he said.