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

Abstract

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. Show more