在合作项目中,例如欧盟资助的Horizon2020EXIMIOUS项目(定位暴露诱导的免疫效应:连接外显子组和免疫组),大量数据的收集和分析在数据管理领域提出了挑战,关于道德和法律方面。然而,研究人员往往缺乏正确的工具和/或对道德/法律框架的准确理解来独立应对这些挑战。在EXIMIOUS项目的合作伙伴机构(研究人员以及道德和法律团队)内部和之间的指导和支持下,在头两个项目年中,我们已经能够理解和解决大多数挑战。这有助于根据欧盟制定的道德和法律框架以及相关合作伙伴的不同国家法规制定数据管理计划和建立数据管理平台。通过这个精心的练习,我们已经获得了使我们的研究数据公平的工具,同时确保数据隐私和安全(符合GDPR标准)。在这里,我们通过开放的研究交流分享我们创建和管理数据工作流的经验,目的是帮助其他研究人员在他们自己的项目中构建他们的数据管理框架。根据EXIMIOUS采取的措施,确保数据的公平管理,我们还根据我们的经验编制了一份清单“DMP检查”,其中包含一系列建议。
Within collaborative projects, such as the EU-funded Horizon 2020 EXIMIOUS project (Mapping Exposure-Induced Immune Effects: Connecting the Exposome and the Immunome), collection and analysis of large volumes of data pose challenges in the domain of data management, with regards to both ethical and legal aspects. However, researchers often lack the right tools and/or accurate understanding of the ethical/legal framework to independently address such challenges. With the guidance and support within and between the partner institutes (the researchers and the ethical and legal teams) in the EXIMIOUS project, we have been able to understand and solve most challenges during the first two project years. This has fed into the development of a Data Management Plan and the establishment of data management platforms in accordance with the ethical and legal framework laid down by the EU and the different national regulations of the partners involved. Through this elaborate exercise, we have acquired tools which allow us to make our research data FAIR (Findable, Accessible, Interoperable, and Reusable), while at the same time ensuring data privacy and security (
GDPR compliant). Herein we share our experience of creating and managing the data workflow through an open research communication, with the aim of helping other researchers build their data management framework in their own projects. Based on the measures adopted in EXIMIOUS to ensure FAIR data management, we also put together a checklist \"DMP CHECK\" containing a series of recommendations based on our experience.