The Australian LINEAGE Study: advancing and implementing international guidance on genomic data within local governance frameworks

The importance of generating and sharing human genomic data for human health is widely recognised. Whilst several international high-level frameworks provide guidance, local governance challenges and concerns of previously under-represented populations mean that the full potential of genomic data sh...

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Bibliographic Details
Main Authors: Tamra Lysaght, Rachel Ankeny, Alex Brown, Rebekah McWhirter, Dianne Nicol, Margaret Otlowski, Bernadette Richards, Ainsley J. Newson
Format: Article
Language:English
Published: Nature Portfolio 2025-04-01
Series:npj Genomic Medicine
Online Access:https://doi.org/10.1038/s41525-025-00492-6
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Summary:The importance of generating and sharing human genomic data for human health is widely recognised. Whilst several international high-level frameworks provide guidance, local governance challenges and concerns of previously under-represented populations mean that the full potential of genomic data sharing remains unrealised. This commentary introduces the LINEAGE study, an Australian research project that is building an empirically-informed and normatively robust governance framework for the generation and sharing of genomic data.
ISSN:2056-7944