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

Lyndsay Newett, Rebekah McWhirter, Lisa Eckstein, Vanessa Warren, Dianne Nicol
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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 (N = 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.

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澳大利亚人对基因组数据共享背景下放弃同意的态度。
本研究确定了澳大利亚人信任人类研究伦理委员会(HREC)在哪些情况下批准使用基因组数据(无需明确同意),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(N = 3013)显示,某些情况比其他情况更有利于提高公众信任度,当未来研究有益和隐私受到保护时,放弃同意会得到认可,但在其他情况下,支持率较低。尽管如此,研究结果表明,影响人们态度的不仅仅是这些特定情况,不同的数据共享环境和参与者属性也会影响人们的看法。最终,这项研究提出了一些问题,并引起了人们对澳大利亚 HREC 在授权放弃同意时使用的标准的关注。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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