Challenges In Aboriginal health in the genomics era

Alex Brown0
(0) South Australian Health and Medical Research Institute

Abstract
Engagement in the genomic era poses significant concerns for Indigenous people. As it currently stands, genomic research has excluded Indigenous peoples from its focus and remit. This leaves up to 370 million of the world’s population unrepresented in existing datasets. The reasons for this marginalisation are complex, but are embedded in a legacy of conflict, depopulation, distrust, institutionalised racism, social disadvantage and estrangement from health and political institutions within society. The scientific community has started to consider the importance of harnessing a more complete understanding of human genetic variation. Increasing focus has been applied to ‘unlocking’ Indigenous and diverse ethnic populations across the globe. But on whose terms and at what cost?

The starting point for engaging Indigenous peoples in genomic research has been framed around two strategies. ‘Selling the Dream’ – which fundamentally speaks to the unfulfilled promise of genomics to cure the ills of Indigenous peoples; and ‘Don’t miss out’ – which levers fear of widening disparities between Indigenous people and non-Indigenous populations.

As yet, it seems the hype has outstripped the reality – but that is unlikely to be the case forever. There is a clear and present need for Indigenous populations to be involved in any genomics future. In part this must be to increase representation. But what is rarely discussed is what else Indigenous peoples offer the world in relation to the conduct, stewardship, ethics, integration, communication and interpretation of genomics research and clinical care. Our particular strengths lie in our ability to understand, communicate and re-interpret context and the broader determinants of health, within which genomics may offer critical insights into our past, present and future. But this will not be possible until Indigenous peoples are afforded our rightful place at the head of decisions that influence our own health and well-being.