他们可以吃我们的蛋糕--但我们能吃它吗?根据澳大利亚隐私法获取原始基因组数据。

IF 0.6 Q2 LAW
Journal of Law and Medicine Pub Date : 2023-12-01
Carolyn Johnston, Jane Nielsen, Mark J Cowley, Rebekah McWhirter, Margaret Otlowski
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引用次数: 0

摘要

在转化基因组研究中,研究参与者要求归还原始基因组数据的呼声日益高涨。本文讨论了澳大利亚隐私和信息自由法律条款的范围和适用。根据澳大利亚隐私立法,是否有权获取此类数据的副本取决于原始基因组数据是否能识别个人,本文探讨了基因组数据与个人关联的机会。我们的结论是,尽管澳大利亚的隐私法复杂且相互重叠,但研究参与者显然有权获取其原始基因组数据。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
They Can Have Our Cake - But Can We Eat It? Access to Raw Genomic Data under Australian Privacy Law.

There is an increasing demand for the return of raw genomic data by research participants in translational genomic research. This article discusses the scope and application of privacy and freedom of information legislative provisions in Australia. Whether there is a right to access a copy of such data under Australian privacy legislation is contingent on whether raw genomic data can identify an individual and this article explores the opportunities for genomic data to be linked to individuals. We conclude that despite the complexity and overlapping nature of privacy laws in Australia, there is a clear right on the part of research participants to access their raw genomic data.

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