Medications affect people differently and we’re increasingly understanding why. Genomics is the study of genes, and is making it possible to predict, diagnose, and treat diseases more precisely and personally than ever. This is known as Precision Medicine. The NSW flagship of the Australian ALliance for Indigenous GeNomics (ALIGN) group led by has a focus on Precision Medicine.
ALIGN is looking for Aboriginal or Torres Strait Island people who have strong connections to NSW to join an Indigenous Governance Committee to guide and advise on the genomics and precision medicine agenda.
This is an opportunity to contribute to ensuring First Nations Australians have access to revolutionary healthcare.
For further information, keep reading below.
The potential for genomics to deliver health benefits is clear, however, the process for ensuring that Indigenous Australians realise these benefits is less certain. Understanding how to deliver equity and benefit to Indigenous Australians through genomics requires a purposeful alliance between community, health, research, government, and industry that privileges Indigenous leadership and sovereignty. To achieve this, and following the successful MRFF grant, we have established the:
Australian ALliance for Indigenous GeNomics (ALIGN)
Sovereignty I Equity I Benefit
https://indigenousgenomics.com.au/
ALIGN is a national consortium, led by the Indigenous Genomics Group at Telethon Kids Institute and the Australian National University, in partnership with Aboriginal and Torres Strait Islander stakeholders, peak bodies and Communities, as well as research, clinical, industry and institutional partners from across Australia. ALIGN is currently comprised of six nodes of activity in Queensland, New South Wales, the Australian Capital Territory, Victoria, South Australia and Western Australia. Each node will coordinate efforts to inform core ALIGN activities in: 1) Indigenous Governance of genomics research and clinical care; 2) the development of best practice data systems and data sovereignty; 3) genomics policy; and 4) developing capacity. These represent key foundations to ensuring the equitable receipt of benefit from genomics. In addition, each node will coordinate a Flagship Program that lays the foundations and articulates clear plans for what is required to deliver meaningful benefit to Indigenous communities. The NSW flagship will focus on Precision Medicine.
Australia has never established an alliance of this kind before. It represents a commitment from academia, industry, Government, and our Indigenous community to work collectively to develop a framework – designed by Indigenous people, for Indigenous people – to deliver the benefit of genomic medicine to all Australians. NSW Node is focused on the Precision medicine, and led by Professor Stephen Simpson, (University of Sydney, Charles Perkins Centre) with investigators from Victor Chang Cardiac Research Institute, The Garvan Institute of Medical Research and University of New South Wales. The work of the NSW node and NSWICG is coordinated and supported Dr Shaz Sazali.
Indigenous governance
Indigenous governance will both underpin and lead ALIGN’s work. It will be instrumental in bringing forward the voices, values, and priorities of Aboriginal and Torres Strait Islander peoples, locally and nationally. There are two levels of Indigenous Governance throughout ALIGN. Firstly, ALIGN National Indigenous Governance Council (“Council”), which includes representation from each of the jurisdictional Indigenous Governance Committees, and invited Indigenous leaders with specific knowledge and skills that can help drive our national Indigenous genetic and genomic health governance agenda. Secondly, the jurisdictional Indigenous Governance Committee (NSWIGC), which includes representation from Indigenous researchers working and living in NSW, and key individuals working in NSW health . We are in the process of forming the NSWIGC. The draft Terms of reference are attached. The Committee will meet up to regularly (frequency is yet to be determined).
If you would like to discuss this further, please feel free to reach out to Professor Alex Brown Alex.Brown@anu.edu.au or Dr Annalee Stearne annalee.stearne@telethonkids.org.au.
