Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.

Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.
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DOI:
10.1177/1556264615594606
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发表时间:
2015-07
期刊:
Journal of empirical research on human research ethics : JERHRE
影响因子:
--
通讯作者:
Parker M
Parker M
中科院分区:
其他
文献类型:
--
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

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共享来自临床和公共卫生研究的个人层面的数据越来越被视为有效和高效的生物医学研究的核心要求。本文讨论了系统回顾和多站点定性研究的结果,主要利益相关者对中低收入环境中伦理数据共享最佳实践的看法。我们的研究表明,为了使数据共享有效和可持续,需要满足多种社会和伦理要求。一个有效的数据共享模式将需要对如何最好地实现科学进步、最大限度地减少伤害风险、促进公平和互惠以及建立和维持信任做出深思熟虑的判断。
Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.