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本文引用的文献

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Cloud-based biomedical data storage and analysis for genomic research: Landscape analysis of data governance in emerging NIH-supported platforms.基于云的生物医学数据存储和分析在基因组研究中的应用:新兴 NIH 支持平台中数据治理的景观分析。
HGG Adv. 2023 Apr 12;4(3):100196. doi: 10.1016/j.xhgg.2023.100196. eCollection 2023 Jul 13.
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Institutional review boards need new skills to review data sharing and management plans.机构审查委员会需要新技能来审查数据共享和管理计划。
Nat Med. 2023 Jun;29(6):1307-1309. doi: 10.1038/s41591-023-02292-w.
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Toward better governance of human genomic data.迈向人类基因组数据更好的治理。
Nat Genet. 2021 Jan;53(1):2-8. doi: 10.1038/s41588-020-00742-6.
4
Towards a European health research and innovation cloud (HRIC).迈向欧洲健康研究与创新云(HRIC)。
Genome Med. 2020 Feb 19;12(1):18. doi: 10.1186/s13073-020-0713-z.
5
Considerations for Genomic Data Privacy and Security when Working in the Cloud.在云端工作时考虑基因组数据隐私和安全。
J Mol Diagn. 2019 Jul;21(4):542-552. doi: 10.1016/j.jmoldx.2018.07.009. Epub 2019 Jan 28.
6
Data Lakes, Clouds, and Commons: A Review of Platforms for Analyzing and Sharing Genomic Data.数据湖、云与公共数据池:基因组数据分析与共享平台综述
Trends Genet. 2019 Mar;35(3):223-234. doi: 10.1016/j.tig.2018.12.006. Epub 2019 Jan 25.
7
Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.转化基因组学中的知情同意:缺乏可靠治理则不足。
J Law Med Ethics. 2018 Mar;46(1):79-86. doi: 10.1177/1073110518766023. Epub 2018 Mar 27.

云端基因组数据科学的伦理治理

Ethical governance for genomic data science in the cloud.

作者信息

Rahimzadeh Vasiliki, Nelson Sarah C, Thorogood Adrian, Lawson Jonathan, Fullerton Stephanie M

机构信息

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.

Department of Biostatistics, University of Washington, Seattle, WA, USA.

出版信息

Nat Rev Genet. 2025 Feb;26(2):75-77. doi: 10.1038/s41576-024-00789-9.

DOI:10.1038/s41576-024-00789-9
PMID:39424902
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11960490/
Abstract

Cloud platforms offer distinct advantages, but questions remain about how to ethically and efficiently manage human genomic data in the cloud. Data governance needs to be adapted to ensure transparency and security for research participants, as well as equitable and sustainable access for researchers.

摘要

云平台具有显著优势,但在如何以符合道德且高效的方式管理云中的人类基因组数据方面,问题依然存在。数据治理需要做出调整,以确保研究参与者的透明度和安全性,以及研究人员能够公平且可持续地获取数据。