Faculty of Law and Director, Centre for Law and Genetics, University of Tasmania.
Centre for Law and Genetics, Faculty of Law University of Tasmania.
J Law Med. 2023 Jul;30(2):326-344.
This article explores the privacy implications of the changing status of genomic data and the consequences for genomic data-sharing. It sets out the theoretical framework for privacy protection in Australia and the centrality of the concept of "personal information" - information from which an individual is "reasonably identifiable". It examines the applicability of this legal framework to genomic data and the challenge from the ever-growing risk of identifiability of such data and implications for research participation and researchers' willingness to share genomic data. The article critiques the binary approach underpinning Australian privacy law based on whether data are "identified" or "de-identified" and highlights the difficulty of applying this distinction to genomic data given their changing status over time. It concludes by examining necessary reforms to provide individuals with more effective privacy protection over their genomic data and which would support data-sharing for genomic research.
本文探讨了基因组数据不断变化的状态所带来的隐私影响，以及基因组数据共享的后果。它阐述了澳大利亚隐私保护的理论框架，以及“个人信息”概念的核心地位——即可以从中合理识别出个人的信息。它考察了这一法律框架对基因组数据的适用性，以及这种数据日益增长的可识别性风险对研究参与和研究人员分享基因组数据的意愿带来的挑战。本文批评了澳大利亚隐私法所依据的“二元论”方法，即数据是“已识别”还是“去识别”，并强调了由于基因组数据随时间不断变化，将这一区别应用于基因组数据存在的困难。最后，本文探讨了必要的改革措施，以提供个人对其基因组数据更有效的隐私保护，并支持基因组研究的数据共享。
