新冠疫情时代大数据使用的社会许可
Social license for the use of big data in the COVID-19 era.
作者信息
Shaw James A, Sethi Nayha, Cassel Christine K
机构信息
Joint Centre for Bioethics, University of Toronto, Toronto, ON Canada.
Institute for Health System Solutions and Virtual Care, Women's College Hospital, University of Toronto, Toronto, ON Canada.
出版信息
NPJ Digit Med. 2020 Oct 2;3:128. doi: 10.1038/s41746-020-00342-y. eCollection 2020.
Abstract
Strategies to enable the reopening of businesses and schools in countries emerging from social-distancing measures revolve around knowledge of who has COVID-19 or is displaying recognized symptoms, the people with whom they have had physical contact, and which groups are most likely to experience adverse outcomes. Efforts to clarify these issues are drawing on the collection and use of large datasets about peoples' movements and their health. In this Comment, we outline the importance of earning social license for public approval of big data initiatives, and specify principles of data law and data governance practices that can promote social license. We provide illustrative examples from the United States, Canada, and the United Kingdom.
摘要
对于正从社交疏远措施中走出来的国家，使企业和学校重新开放的策略围绕着了解哪些人感染了新冠病毒或出现了公认的症状、他们与哪些人有过身体接触，以及哪些群体最有可能出现不良后果。为厘清这些问题所做的努力正借助收集和使用有关人们行动及其健康状况的大型数据集。在本评论文章中，我们概述了获得社会许可以使大数据倡议得到公众认可的重要性，并明确了可促进社会许可的数据法律原则和数据治理实践。我们提供了来自美国、加拿大和英国的示例。
相似文献
1
Social license for the use of big data in the COVID-19 era.新冠疫情时代大数据使用的社会许可
NPJ Digit Med. 2020 Oct 2;3:128. doi: 10.1038/s41746-020-00342-y. eCollection 2020.
2
The Ethical Implications of Big Data Research in Public Health: "Big Data Ethics by Design" in the UK-REACH Study.大数据研究在公共卫生领域的伦理问题：英国-REACH 研究中的“大数据伦理设计”。
Ethics Hum Res. 2022 Jan;44(1):2-17. doi: 10.1002/eahr.500111.
3
Determining the optimal strategy for reopening schools, the impact of test and trace interventions, and the risk of occurrence of a second COVID-19 epidemic wave in the UK: a modelling study.确定英国学校重新开放的最佳策略、检测和追踪干预措施的影响，以及发生第二波 COVID-19 疫情的风险：一项建模研究。
Lancet Child Adolesc Health. 2020 Nov;4(11):817-827. doi: 10.1016/S2352-4642(20)30250-9. Epub 2020 Aug 3.
4
Older people's early experience of household isolation and social distancing during COVID-19.老年人在 COVID-19 期间早期经历的家庭隔离和社交距离措施。
J Clin Nurs. 2020 Nov;29(21-22):4387-4402. doi: 10.1111/jocn.15485. Epub 2020 Sep 13.
5
Social Distance in COVID-19: Drawing the line between protective behavior and stigma manifestation.新冠疫情期间的社交距离：在保护行为和污名表现之间划清界限。
Psychiatriki. 2021 Sep 20;32(3):183-186. doi: 10.22365/jpsych.2021.025. Epub 2021 Aug 5.
7
Why do Mines Fail to Obtain a Social License to Operate?: Insights from the Proposed Kallak Iron Mine (Sweden) and the Prosperity/New Prosperity Gold-Copper Mine (Canada).为什么矿山无法获得运营的社会许可？来自拟议的卡拉克铁矿（瑞典）和繁荣/新繁荣金矿-铜矿（加拿大）的启示。
Environ Manage. 2023 Jul;72(1):19-36. doi: 10.1007/s00267-021-01587-3. Epub 2022 Jan 22.
8
Comparing Public Perceptions and Preventive Behaviors During the Early Phase of the COVID-19 Pandemic in Hong Kong and the United Kingdom: Cross-sectional Survey Study.比较 COVID-19 大流行早期香港和英国的公众认知和预防行为：横断面调查研究。
J Med Internet Res. 2021 Mar 8;23(3):e23231. doi: 10.2196/23231.
9
"Data makes the story come to life:" understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom-a qualitative study.“数据让故事生动起来”：理解英国少数民族医疗工作者大数据研究的伦理和法律影响——一项定性研究。
BMC Med Ethics. 2022 Dec 16;23(1):136. doi: 10.1186/s12910-022-00875-9.
10
The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.大数据伦理：生物医学背景下的当前及可预见问题
Sci Eng Ethics. 2016 Apr;22(2):303-41. doi: 10.1007/s11948-015-9652-2. Epub 2015 May 23.
引用本文的文献
1
The Social Contract for Health and Wellness Data Sharing Needs a Trusted Standardized Consent.健康与福祉数据共享的社会契约需要一个可信的标准化同意书。
Mayo Clin Proc Digit Health. 2023 Oct 7;1(4):527-533. doi: 10.1016/j.mcpdig.2023.07.008. eCollection 2023 Dec.
2
Dying in Darkness: Deviations From Data Sharing Ethics in the US Public Health System and the Data Genocide of American Indian and Alaska Native Communities.在黑暗中消亡：美国公共卫生系统中数据共享伦理的背离以及美国印第安人和阿拉斯加原住民社区的数据种族灭绝
J Med Internet Res. 2025 Mar 26;27:e70983. doi: 10.2196/70983.
3
Public Involvement and Engagement in Big Data Research: Scoping Review.公众参与大数据研究：范围综述
J Particip Med. 2024 Aug 16;16:e56673. doi: 10.2196/56673.
4
Political views and organizational distrust affect rural residents' willingness to share personal data for COVID-19 contact tracing: A cross-sectional survey study.政治观点和组织信任度影响农村居民参与新冠疫情接触者追踪时分享个人数据的意愿：一项横断面调查研究
J Clin Transl Sci. 2023 Mar 27;7(1):e91. doi: 10.1017/cts.2023.33. eCollection 2023.
5
Governing partnerships with technology companies as part of the COVID-19 response in Canada: A qualitative case study.作为加拿大应对新冠疫情举措的一部分，与科技公司建立合作关系：一项定性案例研究。
PLOS Digit Health. 2022 Dec 14;1(12):e0000164. doi: 10.1371/journal.pdig.0000164. eCollection 2022 Dec.
6
Maintaining a social license to operate for wastewater-based monitoring: The case of managing infectious disease and the COVID-19 pandemic.维持基于污水的监测的社会许可：以管理传染病和 COVID-19 大流行为例。
J Environ Manage. 2022 Oct 15;320:115819. doi: 10.1016/j.jenvman.2022.115819. Epub 2022 Jul 22.
7
The social licence for data-intensive health research: towards co-creation, public value and trust.数据密集型健康研究的社会许可：走向共同创造、公共价值和信任。
BMC Med Ethics. 2021 Aug 10;22(1):110. doi: 10.1186/s12910-021-00677-5.
8
A machine learning PROGRAM to identify COVID-19 and other diseases from hematology data.一种用于从血液学数据中识别新冠病毒疾病和其他疾病的机器学习程序。
Future Sci OA. 2021 Jun 12;7(7):FSO733. doi: 10.2144/fsoa-2020-0207. eCollection 2021 Aug.
本文引用的文献
1
Consensus Statement on Public Involvement and Engagement with Data Intensive Health Research.关于公众参与和参与数据密集型健康研究的共识声明。
Int J Popul Data Sci. 2019 Feb 12;4(1):586. doi: 10.23889/ijpds.v4i1.586.
2
Notches on the dial: a call to action to develop plain language communication with the public about users and uses of health data.表盘上的刻度：呼吁采取行动，就健康数据的用户和用途与公众开展通俗易懂的沟通。
Int J Popul Data Sci. 2019 Aug 5;4(1):1106. doi: 10.23889/ijpds.v4i1.1106.
3
International electronic health record-derived COVID-19 clinical course profiles: the 4CE consortium.国际电子健康记录衍生的COVID-19临床病程概况：4CE联盟
NPJ Digit Med. 2020 Aug 19;3:109. doi: 10.1038/s41746-020-00308-0. eCollection 2020.
4
Sharing Health Care Data With Digital Giants: Overcoming Obstacles and Reaping Benefits While Protecting Patients.与数字巨头共享医疗保健数据：在保护患者的同时克服障碍并收获益处。
JAMA. 2020 Feb 11;323(6):507-508. doi: 10.1001/jama.2019.21215.
5
Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.患者和公众对健康数据用于研究的看法和态度：实证证据的叙述性综述。
J Med Ethics. 2022 Jan;48(1):3-13. doi: 10.1136/medethics-2019-105651. Epub 2019 Nov 12.
6
The social licence for research: why care.data ran into trouble.研究的社会许可：为何care.data陷入困境。
J Med Ethics. 2015 May;41(5):404-9. doi: 10.1136/medethics-2014-102374. Epub 2015 Jan 23.
7
More than Tuskegee: understanding mistrust about research participation.超越塔斯基吉：理解对参与研究的不信任
J Health Care Poor Underserved. 2010 Aug;21(3):879-97. doi: 10.1353/hpu.0.0323.
8
Public trust in health care: a comparison of Germany, The Netherlands, and England and Wales.公众对医疗保健的信任：德国、荷兰以及英格兰和威尔士的比较。
Health Policy. 2007 Apr;81(1):56-67. doi: 10.1016/j.healthpol.2006.04.004. Epub 2006 Jun 14.
9
Public trust in health care: the system or the doctor?公众对医疗保健的信任：是对体系还是对医生的信任？
Qual Saf Health Care. 2004 Apr;13(2):92-7. doi: 10.1136/qshc.2003.009001.
Zotero 插件