关于 "商业化效应 "对公众对生物库和基因组数据储存库的态度的系统性文献综述。

IF 3.5 2区 文学 Q1 COMMUNICATION Public Understanding of Science Pub Date : 2024-07-01 Epub Date: 2024-02-22 DOI:10.1177/09636625241230864
Jarrod Walshe, Brad Elphinstone, Dianne Nicol, Mark Taylor
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引用次数: 0

摘要

为推动健康研究而收集和共享基因组数据的倡议非常普遍,而且正在加速发展。这些工作中的商业利益虽然至关重要,但可能会削弱公众对提供个人基因组数据的信任和意愿,而这些数据正是这些计划所依赖的。在商业参与的背景下,了解公众对为健康研究提供基因组数据的态度至关重要。在 PRISMA 的指导下,我们搜索了六个在线学术数据库,发现了 113 项定量和定性研究,这些研究使用了与公众对生物库和基因组数据的管理、收集、访问和使用中的商业参与者的态度有关的原始数据。商业利益的存在引发了公众对同意、隐私和数据安全、对科学和科学家的信任、利益共享以及健康数据的所有权和控制权等相互关联的问题的关注。因此,要保持公众对基因组健康计划的信任和支持,就必须认真考虑监管和数据治理及访问政策。
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A systematic literature review of the 'commercialisation effect' on public attitudes towards biobank and genomic data repositories.

Initiatives that collect and share genomic data to advance health research are widespread and accelerating. Commercial interests in these efforts, while vital, may erode public trust and willingness to provide personal genomic data, upon which these initiatives depend. Understanding public attitudes towards providing genomic data for health research in the context of commercial involvement is critical. A PRISMA-guided search of six online academic databases identified 113 quantitative and qualitative studies using primary data pertaining to public attitudes towards commercial actors in the management, collection, access, and use of biobank and genomic data. The presence of commercial interests yields interrelated public concerns around consent, privacy and data security, trust in science and scientists, benefit sharing, and the ownership and control of health data. Carefully considered regulatory and data governance and access policies are therefore required to maintain public trust and support for genomic health initiatives.

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来源期刊
CiteScore
7.30
自引率
9.80%
发文量
80
期刊介绍: Public Understanding of Science is a fully peer reviewed international journal covering all aspects of the inter-relationships between science (including technology and medicine) and the public. Public Understanding of Science is the only journal to cover all aspects of the inter-relationships between science (including technology and medicine) and the public. Topics Covered Include... ·surveys of public understanding and attitudes towards science and technology ·perceptions of science ·popular representations of science ·scientific and para-scientific belief systems ·science in schools
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