‘Nothing about us, without us’: Precision medicine to bridge life expectancy gap for First Nations people

A national centre was launched yesterday during the International Congress of Genetics, with the aim of revolutionising healthcare for Indigenous Australians by harnessing the power of genomics. This initiative, known as the Australian Alliance for Indigenous Genomics (ALIGN), seeks to bridge the gap in life expectancy, which currently stands at 10 years less for Indigenous Australians compared to the general population.

According to Alex Brown, Lead of ALIGN and Professor of Indigenous Genomics at the Telethon Kids Institute and the Australian National University, a significant portion of this life expectancy discrepancy can be attributed to chronic diseases. Professor Brown, a member of the Yuin Nation who grew up on the NSW South Coast, emphasised the potential of personalised medicine to provide profound insights into prevalent conditions.

“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. ALIGN is a commitment designed by Indigenous people, for Indigenous people, to offer the benefit of genomic medicine to all. Its basic premise is ‘nothing about us, without us’. This is critical to ensure equity is achieved in health outcomes,” he said.

To ensure respectful treatment of DNA samples provided by Indigenous Australians, ALIGN will be governed by an Indigenous Council. The alliance will be led by a team at the Telethon Kids Institute Adelaide, responsible for scientific and operational coordination. Meanwhile, researchers across the nation will spearhead various initiatives within ALIGN.

Across the country, experts have expressed their support for ALIGN and the transformative impact it could have on Indigenous healthcare. Associate Professor Misty Jenkins, Gunditjmara woman and Immunology Lab Head at the Walter and Eliza Hall Institute in Victoria, believes that ALIGN is a crucial step toward addressing 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.

Professor Stephen Simpson, Charles Perkins Centre Academic Director in NSW, emphasised the need to integrate genomics with other crucial factors such as social, cultural, and environmental elements, in order to deliver precision medicine solutions tailored to the unique needs of Aboriginal and Torres Strait Islander communities.

Greg Pratt, Manager of Research and Evidence at the Queensland Aboriginal and Islander Health Council, stressed that equitable access to genetic healthcare relies on strong leadership from primary health service providers, particularly 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.

Dr Hardip Patel, Bioinformatics Lead at the National Centre for Indigenous Genomics at the Australian National University in Canberra, noted that long-term partnerships with Indigenous communities are crucial for the successful integration of genomics research into healthcare. Such collaborations will facilitate the transition from diagnosis and treatment to predictive and preventative genomics medicine.

In Western Australia, Professor Gareth Baynam, Head of the WA Register of Developmental Anomalies, highlighted the extensive collaboration between stakeholders, Aboriginal health leaders, and communities over the past decade to unlock the potential of genomics for individuals living with rare diseases.

“Building on this through ALIGN will help take this work to the next level,” he commented.

The Canberra team will focus on identifying and comprehending the genomes of Indigenous Australians, striving to deliver precision healthcare tailored to their specific needs. In New South Wales, researchers will utilise genomic medicine to uncover personalised treatments for Indigenous Australians grappling with type 2 diabetes, heart disease, and cancer. Meanwhile, the Brisbane team aims to determine the health service and system requirements necessary to support genomic medicine, ensuring that treatments are most suitable for Indigenous patients.

Scientists in Victoria will employ genomic medicine to gain a deeper understanding of immune-related disorders prevalent among Indigenous Australians, in hopes of improving treatment outcomes. Lastly, the Perth team will harness advances in genomic medicine to further their work in unlocking better health outcomes for approximately 40,000 Indigenous Australians affected by rare diseases.

With the launch of ALIGN, Indigenous Australians can look forward to a future where personalised genomic medicine is leveraged to address health disparities, improve treatment outcomes, and ensure equitable access to quality healthcare.

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