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澳大利亚在基因组数据共享背景下对同意豁免的态度。

Australian Attitudes Towards Waivers of Consent Within the Context of Genomic Data Sharing.

机构信息

University of Tasmania, Hobart, TAS, Australia.

Australian National University, Canberra, ACT, Australia.

出版信息

J Empir Res Hum Res Ethics. 2024 Jul;19(3):113-123. doi: 10.1177/15562646241261848.

Abstract

This research identifies the circumstances in which Human Research Ethics Committees (HRECs) are trusted by Australians to approve the use of genomic data - without express consent - and considers the impact of genomic data sharing settings, and respondent attributes, on public trust. Survey results ( = 3013) show some circumstances are more conducive to public trust than others, with waivers endorsed when future research is beneficial and when privacy is protected, but receiving less support in other instances. Still, results imply attitudes are influenced by more than these specific circumstances, with different data sharing settings, and participant attributes, affecting views. Ultimately, this research raises questions and concerns in relation to the criteria HRECs use when authorising waivers of consent in Australia.

摘要

本研究确定了澳大利亚人在何种情况下信任人类研究伦理委员会(HRECs)在没有明确同意的情况下批准使用基因组数据,并考虑了基因组数据共享设置和受访者属性对公众信任的影响。调查结果( = 3013)表明,某些情况比其他情况更有利于公众信任,当未来研究有益且隐私得到保护时,豁免会得到认可,但在其他情况下则得到的支持较少。尽管如此,结果表明,态度不仅受到这些具体情况的影响,不同的数据共享设置和参与者属性也会影响观点。最终,这项研究提出了与澳大利亚 HRECs 在授权同意豁免时使用的标准有关的问题和关注。

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