What does 'genomic equity' mean?
Jim O’Shea and Professor Alex Brown discuss the crucial roles of cultural safety, equity and sovereignty in genomic care for Aboriginal and Torres Strait Islander peoples.
It's time for culturally safe genomic care
The Victorian Aboriginal Community Controlled Organisation (VACCHO) has called for stronger action to make genomic care accessible, culturally safe and equitable for Aboriginal and Torres Strait Islander peoples.
Speaking at The State of Genomic Care summit, VACCHO’s Chief Operating Officer Jim O’Shea said: “We're at a critical moment in healthcare where genomics is transforming how we diagnose, treat, and prevent disease. But we must ask ourselves, are we ensuring that this transformation benefits everyone equally?”
Mr O’Shea outlined three issues that must be addressed: equal access to genomic care, cultural safety within healthcare settings, and fair funding to ensure Aboriginal and Torres Strait Islander people do not continue to miss out on genomic advances.
He also set out a challenge to the audience. “Our call to action: what can YOU do? As leaders in healthcare and research you have the power to drive meaningful change. I challenge you to ask yourself, can you confidently say your organisation provides culturally safe genomic care? Are Indigenous voices shaping your genomic healthcare policies and practices? How are you ensuring genomic services are equitable and accessible to Aboriginal and Torres Strait Islander patients?”
The road to equity
A powerful presentation from Professor Alex Brown from the Australian Alliance for Indigenous Genomics (ALIGN) explored the key issues that underpin genomic equity.
Prof Brown began by pointing out the uniqueness in the genetic architecture of Australia’s Indigenous populations, as well as the heterogeneity that exists across the multitude of communities across the country.
Prof Brown emphasised that Aboriginal and Torres Strait Islander people were under-represented in genomic databases that are utilised to develop precision medicine tools that could improve the health and lives of families and Communities.
He noted that inclusion alone would not deliver benefit, and that the lens must shift to equity and sovereignty. “We have questions to contend with about whether or not genomics can be used to reduce health inequalities, not just can we make sure that Aboriginal and Torres Strait people can get some please?”
Prof Brown also shared many questions from Aboriginal communities: from whether genomics could unpack the reasons behind high prevalence and early onset of chronic disease, to who has control over genomic data, to how to prioritise genomics among other pressing health and wellbeing issues.
Finally, he discussed the work of ALIGN, in the context of a worldwide Indigenous genomics movement. “And the reality is, Indigenous genomics is not just getting some genomics to Indigenous people. It is … a new way of considering the way in which genomics can be applied, the way it can be built, the way it can be held to account, and the way in which it can be driven by Indigenous people for the benefit of all.”