Wendelborn Christian, Anger Michael, Schickhardt Christoph
Section for Translational Medical Ethics, National Center for Tumour Diseases (NCT), Heidelberg, Germany; German Cancer Research Center (DKFZ), Heidelberg, Germany.
Section for Translational Medical Ethics, National Center for Tumour Diseases (NCT), Heidelberg, Germany; German Cancer Research Center (DKFZ), Heidelberg, Germany.
J Biomed Inform. 2023 Apr;140:104337. doi: 10.1016/j.jbi.2023.104337. Epub 2023 Mar 17.
Data stewardship is a term that is understood in heterogenous ways. In recent organisational developments and efforts to build infrastructures and hire professional staff for research data management in various scientific fields in Europe, data stewardship is understood as mainly aiming at optimising data management in line with the FAIR principles (findability, accessibility, interoperability, reusability) forpurposes of reuse in the interests of the scientific community and the public. In addition, especially in the health and biomedical sciences some understandings of data stewardship mainly focus on the responsibility to respect the informational rights of data subjects. Following on from these different understandings and from recent developments to include ever more stakeholders in data stewardship, we propose a comprehensive understanding of data stewardship. According to this comprehensive understanding, data stewardship includes responsibilities towards all pertinent stakeholders and to equally consider and respect their legitimate rights and interests in order to build and maintain an efficient, trusted and fair data ecosystem. We also point out some of the practical challenges implied in such a comprehensive understanding.
数据管理是一个存在多种不同理解方式的术语。在欧洲近期的组织发展以及为各科学领域的研究数据管理构建基础设施和雇佣专业人员的努力中，数据管理主要被理解为旨在依据FAIR原则（可查找性、可访问性、互操作性、可重用性）优化数据管理，以便为科学界和公众的利益进行重用。此外，特别是在健康和生物医学科学领域，对数据管理的一些理解主要侧重于尊重数据主体信息权利的责任。基于这些不同的理解以及近期将越来越多的利益相关者纳入数据管理的发展趋势，我们提出了对数据管理的全面理解。根据这种全面理解，数据管理包括对所有相关利益者的责任，并平等考虑和尊重他们的合法权利和利益，以构建和维护一个高效、可信且公平的数据生态系统。我们还指出了这种全面理解所隐含的一些实际挑战。
