Bull Susan, Roberts Nia, Parker Michael
University of Oxford, UK
University of Oxford, UK.
J Empir Res Hum Res Ethics. 2015 Jul;10(3):225-38. doi: 10.1177/1556264615594767.
There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders' perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings. We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders' perspectives.
对于分享医学和公共卫生研究产生的个人层面数据的支持日益增加。这项对实证研究和概念文献的范围审查考察了利益相关者对数据共享中道德最佳实践的看法,特别是在低收入和中等收入环境中。审查了69篇实证和概念文章,其中只有5篇是实证研究,8篇是关注低收入和中等收入环境的概念文章。我们得出结论,对分享个人层面数据的支持取决于制定和实施国际和地方政策及流程,以支持道德最佳实践。需要进一步的概念和实证研究,以确保低收入和中等收入环境中的数据共享政策和流程能适当地考虑利益相关者的观点。