In this episode of The Pathology Report, Dr Kym Mina speaks with Ms Louise Lyons, senior manager strategy and policy, Indigenous genomics at the Telethon Kids Institute, about Indigenous genomics, examining governance frameworks and culturally appropriate practices in healthcare and research.
Ms Lyons shares her experience as a proud Jaadwa woman from western Victoria and her leadership role at the Kids Research Institute Australia, where she works in partnership with Professor Alex Brown and other key figures in Indigenous health and genomics.
She explains the concept of Indigenous governance in research and health delivery, emphasising the critical importance of recognising Aboriginal ways of knowing, being and doing. She discusses how governance structures can address historical barriers to equitable healthcare access for Aboriginal and Torres Strait Islander peoples.
Ms Lyons suggests practical approaches to translating genomic research into culturally appropriate models of care, including:
- Community engagement in identifying health and research priorities
- Co-design principles for research and service delivery
- Strategies for collecting accurate identity data
- Development of resources using accessible language
- Building cultural competency within healthcare staff
Ms Lyons describes collaborative efforts to develop culturally appropriate resources about genetics and genomics specifically for Indigenous communities across Australia. She highlights how these resources incorporate Indigenous perspectives on consent, data sovereignty and the complex meanings of family and kinship structures.
Discussing Indigenous data sovereignty principles, Ms Lyons emphasises the need for informed consent processes and culturally appropriate protocols for biospecimen handling. The approaches used, she says, should respect cultural values, including repatriation or culturally supported custodianship of specimens.
She adds that these principles provide valuable insights into building culturally safe genomic research environments, the role of Indigenous governance in ensuring ethical practice, and the broader implications of Indigenous-led approaches for healthcare and research across all populations.
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