澳大利亚谱系研究：在地方治理框架内推进和实施关于基因组数据的国际指南。

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

作者信息

Lysaght Tamra, Ankeny Rachel, Brown Alex, McWhirter Rebekah, Nicol Dianne, Otlowski Margaret, Richards Bernadette, Newson Ainsley J

机构信息

Sydney Health Ethics, Sydney School of Public Health, The University of Sydney, Faculty of Medicine and Health, Sydney, NSW, Australia.

Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.

出版信息

NPJ Genom Med. 2025 Apr 30;10(1):34. doi: 10.1038/s41525-025-00492-6.

DOI:10.1038/s41525-025-00492-6

PMID:40307304

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12043809/

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.

摘要

生成和共享人类基因组数据对人类健康的重要性已得到广泛认可。虽然有几个国际高层框架提供了指导，但地方治理挑战以及以前代表性不足人群的担忧意味着基因组数据共享的全部潜力仍未实现。本评论介绍了谱系研究，这是一个澳大利亚的研究项目，正在为基因组数据的生成和共享构建一个基于实证且规范稳健的治理框架。