Culturally appropriate resources expand access to benefits of genetics and genomics

Longstanding calls from Aboriginal and Torres Strait Islander communities for culturally grounded information about genetics and genomics has led to a ground-breaking suite of resources from the National Centre for Indigenous Genomics (NCIG) at the Australian National University.

Launched recently by NCIG and supported by Australian Genomics the materials will help people seeking to understand genetic conditions, genetic testing and genomics research, and to navigate the sometimes-complex pathways to these.

Their release comes amid heightened awareness internationally of the need to improve equity of access to the benefits of genetics and genomics, particularly for First Nations peoples.

“We’ve been working with Aboriginal communities for the last 10 years, and in that time we’ve seen a steady increase in the number of First Nations people being referred to or wanting to access genetic and genomic health services,” said NCIG Deputy Director, Associate Professor Azure Hermes.

“But many community members have told us there are no culturally appropriate resources that explain what these services are, how they can help, or what to expect.” 

The resources include storytelling through animations, plain language definitions, interviews with genetic counsellors, a map of genetic services nationally and other materials that reflect community voice, values and knowledge. They will be translated into five Indigenous languages.

Australian Genomics Managing Director Tiffany Boughtwood said the materials had enormous potential to support more equitable and culturally safe genomics research and clinical care in Australia.

“These resources address a clear need identified by Aboriginal and Torres Strait Islander communities. They will support First Nations families navigate genomic healthcare, strengthen the confidence of health workers, and improve genomic engagement and understanding of Indigenous and non-Indigenous peoples alike,” she said.

NCIG worked closely with community organisations across Australia throughout the project – Building Knowledge of Genomics in Partnership.

See the resources here.