数据管理和共享数据
Claude Pellen1, Nchangwi Syntia Munung2, Anna Catharina Armond3
1University Rennes, CHU Rennes, Inserm, EHESP, Irset (Institut de recherche en santé, environnement et travail) - UMR_S 1085, Centre d'investigation clinique de Rennes (CIC1414), Rennes, France.
Journal of clinical epidemiology
|January 22, 2025
概括
生物医学研究中负责任的数据共享需要克服知识差距,时间限制和法律障碍. 战略规划和利益相关者合作对于将数据共享作为标准实践至关重要.
科学领域:
- 生物医学研究生物医学研究
- 数据科学数据科学数据科学
- 研究伦理学研究伦理学
背景情况:
- 以FAIR原则为指导的负责任的数据共享,需要高质量的数据集.
- 研究人员面临实施数据管理和共享计划的挑战,包括知识差距,时间限制以及法律/技术/财务问题.
- 对数据所有权,隐私,知识产权和竞争优势的担忧阻碍了数据共享.
研究的目的:
- 确定在生物医学研究中实施有效数据管理和共享计划的障碍.
- 探索患者,研究人员和资助者的数据共享观点.
- 突出需要全球解决方案和战略规划,以负责任地共享数据.
主要方法:
- 文献审查和对当前数据共享实践和挑战的综合分析.
- 分析有关数据所有权,隐私和知识产权的利益相关者的担忧.
- 审查现有的政策和倡议,促进数据共享.
主要成果:
- 由于各种限制,研究人员在实际实施数据共享计划方面遇到了困难.
- 患者通常支持数据共享,而研究人员和资助者表示担忧.
- 现有的政策不足,数据共享的全球公平性仍然是一个挑战.
结论:
- 实施负责任的数据共享需要解决知识缺陷,资源限制和法律复杂性.
- 研究实践的文化转变和所有利益相关者之间的协调努力至关重要.
- 开发全球解决方案对于公平参与至关重要,特别是来自低收入和中等收入国家.
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