Petersen Carolyn
Division of Biomedical Statistics and Informatics, Global Business Solutions, Mayo Clinic, Rochester, Minnesota, USA.
JAMIA Open. 2019 Oct 1;2(4):402-406. doi: 10.1093/jamiaopen/ooz043. eCollection 2019 Dec.
Data sharing agreements that clearly describe what individuals are agreeing to and what responsibilities data stewards will undertake are crucial for the establishment, maintenance, and flourishing of genomic datasets. To optimize genomic data resources, researchers, care professionals, and informaticians must regard system design, user objectives, and environmental considerations through users' eyes, identifying fundamental values on which to build and potential barriers to success that must be avoided. Design of agreements that promote desired data sharing and protect valuable data resources as necessary begins with a review of user interests and concerns. Nontraditional approaches for informed consent (eg, abbreviated informed consent, electronic informed consent, and dynamic consent) can facilitate achievement of data donors' privacy-related goals while making data available to researchers. Transparency in individual-researcher interactions, recognition and accommodation of cultural differences, and identification of shared needs and goals create a foundation for data sharing agreements that work over short and long terms.
明确描述个人同意内容以及数据管理者将承担何种责任的数据共享协议，对于基因组数据集的建立、维护和繁荣至关重要。为了优化基因组数据资源，研究人员、医护专业人员和信息专家必须从用户的角度审视系统设计、用户目标和环境因素，确定可赖以构建的基本价值观以及必须避免的潜在成功障碍。设计既能促进理想的数据共享又能在必要时保护宝贵数据资源的协议，首先要审视用户的利益和关切。非传统的知情同意方法（如简化知情同意、电子知情同意和动态同意）可以促进数据捐赠者实现与隐私相关的目标，同时又能将数据提供给研究人员。个体与研究人员互动中的透明度、对文化差异的认识与包容，以及对共同需求和目标的识别，为短期和长期有效的数据共享协议奠定了基础。
