在研究中对健康数据的二次使用中概念化公平:范围审查
Patricia Cervera de la Cruz1, Mahsa Shabani1,2
1Metamedica, Faculty of Law and Criminology, University of Ghent, Ghent, Belgium.
Accountability in research
|October 18, 2023
概括
在研究中,对二级健康数据使用的公平性至关重要,特别是在欧洲健康数据空间 (EHDS) 中. 关键要素包括平衡利益,减少权力不平衡,规范商业用途和分享利益.
科学领域:
- 医疗信息学 医疗信息学
- 生物伦理学生物伦理学
- 公共卫生政策 公共卫生政策
背景情况:
- 欧洲健康数据空间 (EHDS) 越来越关注研究中对二次健康数据的使用.
- 二级医疗数据处理为新型研究和改善医疗保健提供提供了潜力.
- 确保二次健康数据使用的公平性是监管要求,但缺乏明确的定义.
研究的目的:
- 在科学研究中对健康数据的二次使用中探索公平性的概念化.
- 确定确保健康数据研究公平性的关键原则.
主要方法:
- 进行了基于论证的文献的范围审查.
- 选了35个出版物进行最终综合.
- 使用了感应方法和主题分析.
主要成果:
- 确定平衡个人和公共利益对于公平至关重要.
- 强调减少数据使用中的功率不对称的重要性.
- 强调商业参与的设定条件和实施利益共享.
结论:
- 权益平衡,减轻权力不平衡,规范商业用途和利益共享对于公平的二次健康数据研究至关重要.
- 结果可以指导当前和未来的研究实践和政策制定.
- 解决公平性问题对于道德的二次健康数据利用至关重要.
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