Empowering Communities in Genomics
Lyndsay Newett1, National Centre For Indigenous Genomics (Australian National University) Canberra 1National Centre For Indigenous Genomics (Australian National University), Canberra, ACT, Australia
Abstract
Genomics has the potential to greatly improve understandings of, and the diagnosis and treatment of, a range of diseases and health conditions. Consequently, this field is often thought to offer new opportunities for populations – like Aboriginal and Torres Strait Islander peoples – who are disproportionately impacted by certain diseases, and health conditions. Still, the nature of genomics, and the issues that come with genomic data storage, sharing, and ownership, means this field also raises new concerns, particularly for Aboriginal and Torres Strait Islander peoples who continue to face discrimination, and barriers to accessing and benefitting from Western models of healthcare, in Australia.
With the advantages and risks that genomics brings, it is clear there is a need to establish a framework to guide how genomics is undertaken in relation to this population. To be effective, it will need to reflect the priorities, and protect the interests of Aboriginal and Torres Strait Islander peoples. This requires Indigenous leadership, and extensive community engagement.
This presentation details the approach to community engagement that is being undertaken by the National Centre for Indigenous Genomics (NCIG) to help inform the development of an Indigenous-led genomics governance framework. It will highlight how NCIG is working to explore, and build on Aboriginal and Torres Strait Islander peoples’ knowledge of genomics and genomic data. It will also present some early findings on community perspectives relating to 1) data storage and sharing practices; 2) data sovereignty; and 3) the return of incidental findings.
Biography
Lyndsay is a Research Fellow at the National Centre for Indigenous Genomics (NCIG). Before beginning this role, Lyndsay worked as a Research Fellow within the Centre for Law and Genetics at the University of Tasmania while she completed the final years of a PhD in Sociology. A mixed-methods researcher, Lyndsay has been involved with several Australian health-related projects, as well as studies examining new technologies, and community attitudes.