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共享公共卫生研究数据:推动低收入和中等收入地区道德数据共享实践的发展。

Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings.

作者信息

Parker Michael, Bull Susan

机构信息

University of Oxford, UK

University of Oxford, UK.

出版信息

J Empir Res Hum Res Ethics. 2015 Jul;10(3):217-24. doi: 10.1177/1556264615593494.

Abstract

It is increasingly recognized that effective and appropriate data sharing requires the development of models of good data-sharing practice capable of taking seriously both the potential benefits to be gained and the importance of ensuring that the rights and interests of participants are respected and that risk of harms is minimized. Calls for the greater sharing of individual-level data from biomedical and public health research are receiving support among researchers and research funders. Despite its potential importance, data sharing presents important ethical, social, and institutional challenges in low-income settings. In this article, we report on qualitative research conducted in five low- and middle-income countries exploring the experiences of key research stakeholders and their views about what constitutes good data-sharing practice.

摘要

人们越来越认识到,有效且恰当的数据共享需要建立良好的数据共享实践模式,这种模式要认真对待可能获得的潜在益处,也要重视确保参与者的权益得到尊重,并将危害风险降至最低。来自生物医学和公共卫生研究的个人层面数据加大共享的呼声在研究人员和研究资助者中得到了支持。尽管数据共享具有潜在的重要性,但在低收入环境中,数据共享也带来了重要的伦理、社会和制度挑战。在本文中,我们报告了在五个低收入和中等收入国家进行的定性研究,该研究探讨了关键研究利益相关者的经历以及他们对良好数据共享实践构成要素的看法。

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本文引用的文献

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Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.
J Empir Res Hum Res Ethics. 2015 Jul;10(3):302-13. doi: 10.1177/1556264615594606.
5
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Preparing individual patient data from clinical trials for sharing: the GlaxoSmithKline approach.
Pharm Stat. 2014 May-Jun;13(3):179-83. doi: 10.1002/pst.1615. Epub 2014 Mar 25.

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