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Revisiting community engagement methods in the context of data science research and big data use in South Africa.

作者信息

Nair Gonasagrie, Burgess Theresa L, Obasa Adetayo E, Kling Sharon, Singh Shenuka

机构信息

Centre for Medical Ethics and Law, WHO Bioethics Collaborating Centre, Department of Medicine, Stellenbosch University, Cape Town, South Africa.

Division of Physiotherapy, Department of Health and Rehabilitation Sciences, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.

出版信息

S Afr J Sci. 2023 May-Jun;119(5-6). doi: 10.17159/sajs.2023/14723. Epub 2023 May 30.

DOI:10.17159/sajs.2023/14723
PMID:39328372
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11426191/
Abstract
摘要

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本文引用的文献

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"": Can Ethics Review Help Address the "3 Ts" of Tokenism, Toxicity, and Tailoring in Stakeholder Engagement?“3Ts”（代表性不足、有害影响和量身定制）在利益相关者参与中引发的问题，伦理审查能帮忙解决吗？
J Empir Res Hum Res Ethics. 2022 Jul;17(3):292-303. doi: 10.1177/15562646221078415. Epub 2022 Feb 14.
2
The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study.大数据对研究伦理委员会的挑战：瑞士的定性研究
J Empir Res Hum Res Ethics. 2022 Feb-Apr;17(1-2):129-143. doi: 10.1177/15562646211053538. Epub 2021 Nov 15.
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Pandemic Analytics: How Countries are Leveraging Big Data Analytics and Artificial Intelligence to Fight COVID-19?疫情分析：各国如何利用大数据分析和人工智能抗击新冠疫情？
SN Comput Sci. 2022;3(1):54. doi: 10.1007/s42979-021-00923-y. Epub 2021 Nov 9.
4
Ethics review of big data research: What should stay and what should be reformed?大数据研究的伦理审查：哪些应保留，哪些应改革？
BMC Med Ethics. 2021 Apr 30;22(1):51. doi: 10.1186/s12910-021-00616-4.
5
Developing pathways for community-led research with big data: a content analysis of stakeholder interviews.发展社区主导的大数据研究途径：利益相关者访谈的内容分析。
Health Res Policy Syst. 2020 Jul 8;18(1):76. doi: 10.1186/s12961-020-00589-7.
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Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking.泰格堡研究受乌班图启发的社区参与模式：将社区参与融入基因组生物样本库
Biopreserv Biobank. 2019 Dec;17(6):613-624. doi: 10.1089/bio.2018.0136. Epub 2019 Nov 25.
7
Crowdsourcing in medical research: concepts and applications.医学研究中的众包：概念与应用
PeerJ. 2019 Apr 12;7:e6762. doi: 10.7717/peerj.6762. eCollection 2019.
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Biomedical Big Data: New Models of Control Over Access, Use and Governance.生物医学大数据：访问、使用和治理的新控制模式
J Bioeth Inq. 2017 Dec;14(4):501-513. doi: 10.1007/s11673-017-9809-6. Epub 2017 Oct 5.
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Did I Tell You That? Ethical Issues Related to Using Computational Methods to Discover Non-Disclosed Patient Characteristics.我告诉过你那件事吗？与使用计算方法发现未公开的患者特征相关的伦理问题。
J Empir Res Hum Res Ethics. 2016 Jul;11(3):214-9. doi: 10.1177/1556264616661611.
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Using the Emanuel et al. framework to assess ethical issues raised by a biomedical research ethics committee in South Africa.运用伊曼纽尔等人的框架来评估南非一个生物医学研究伦理委员会所引发的伦理问题。
J Empir Res Hum Res Ethics. 2014 Dec;9(5):36-45. doi: 10.1177/1556264614553172. Epub 2014 Oct 13.