Data sharing practices in collaborative human genomic research in low- and middle-income countries: A systematic review protocol.
Data sharing practices in collaborative human genomic research in low- and middle-income countries: A systematic review protocol.
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DOI：
10.1371/journal.pone.0292996
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发表时间：
2023
期刊：
影响因子：
3.7
通讯作者：
中科院分区：
文献类型：
--
作者：
通过将研究参与者的数据合并到更大的存储库中来创建大型数据库的做法越来越普遍。资助者现在要求在新资助的研究项目中考虑数据共享，除非有正当理由不这样做。获取基因组数据带来了沿着的一系列伦理问题，以及高收入和中低收入国家研究人员之间开展合作研究的公平和公正问题。本系统性综述方案将根据PRISMA -指南制定，该指南参考了开放科学框架，在PROSPERO（https：//www.crd.york.ac.uk/pagio/）记录CRD 42022297984中注册，并在同行评审期刊上发表。数据来源包括PubMed、Google Scholar、EMBASE、Web of Science和MEDLINE。将检索已发表文献和灰色文献。将联系主题专家，包括生物伦理学家，基因组研究项目的主要研究人员和研究管理人员。重复数据删除后，将筛选标题和摘要的合格性。在由一对独立的审查员进行偏倚风险评估之前，将使用EPPI-Reviewer软件中设计的试点表格进行数据提取。任何分歧将通过协商一致解决。将使用结构化叙述综合和可行的元分析进行分析。本次审查将试图突出的背景下，全球南北和南南合作的人类基因组研究在低收入和中等收入国家的数据共享的做法。这篇综述将加强国际合作基因组研究中数据共享的伦理、法律的和社会影响的证据体系，为数据共享制定标准。报告全文将与包括大学、民间社会、资助者和基因组研究部门在内的相关利益攸关方分享，以确保在中低收入国家（LMIC）的充分覆盖。
The practice of creating large databases has become increasingly common by combining research participants’ data into larger repositories. Funders now require that data sharing be considered in newly funded research project, unless there are justifiable reasons not to do so. Access to genomic data brings along a host of ethical concerns as well as fairness and equity in the conduct of collaborative research between researchers from high- income and low-and middle-income countries. This systematic review protocol will be developed in line with PRISMA -guidelines which refers to Open Science Framework, registered in PROSPERO (https://www.crd.york.ac.uk/prospero/) record CRD42022297984 and published in a peer reviewed journal. Data sources will include PubMed, google scholar, EMBASE, Web of science and MEDLINE. Both published and grey literature will be searched. Subject matter experts including bioethicists, principal investigators of genomic research projects and research administrators will be contacted. After de-duplication, titles and abstracts will be screened for eligibility. Data extraction will be undertaken using a piloted form designed in EPPI-Reviewer software before conducting risk of bias assessments by a pair of reviewers, acting independently. Any discrepancies will be resolved by consensus. Analysis will be done using a structured narrative synthesis and where feasible metanalysis. This review will attempt to highlight the context of data sharing practices in the global North-South and South-South collaborative human genomic research in low- and middle-income countries. This review will enhance the body of evidence on ethical, legal and social implications of data sharing in international collaborative genomic research setting criteria for data sharing. The full report will be shared with relevant stakeholders including universities, civil society, funders, and departments of genomic research to ensure an adequate reach in low-and middle-income countries (LMICs).
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DOI：
10.1177/1556264615594606
发表时间：
2015-07
期刊：
Journal of empirical research on human research ethics : JERHRE
影响因子：
--
作者：
Bull S;Cheah PY;Denny S;Jao I;Marsh V;Merson L;Shah More N;Nhan le NT;Osrin D;Tangseefa D;Wassenaar D;Parker M
通讯作者：
Parker M
DOI：
10.1080/11287462.2018.1441780
发表时间：
2018
期刊：
Global bioethics = Problemi di bioetica
影响因子：
--
作者：
Bezuidenhout L;Chakauya E
通讯作者：
Chakauya E
DOI：
10.1177/15562646231171289
发表时间：
2023-07
影响因子：
1.3
作者：
Kaawa-Mafigiri, David;Sebatta, Deborah Ekusai;Munabi, Ian;Mwaka, Erisa Sabakaki
通讯作者：
Mwaka, Erisa Sabakaki
影响因子：
2.7
作者：
de Vries, Jantina;Munung, Syntia Nchangwi;Tindana, Paulina
通讯作者：
Tindana, Paulina
影响因子：
7.2
作者：
Anderson, Laurie M.;Oliver, Sandy R.;Shemilt, Ian
通讯作者：
Shemilt, Ian