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A Privacy Preserving Approach to Feasibility Analyses on Distributed Data Sources in Biomedical Research

机译:生物医学研究中分布式数据源的可行性分析隐私保留方法

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Funding agencies and field experts promote reuse of scientific data and biomaterial beyond the scope of the original project. The availability of research data, however, is limited by the interest of original authors as well as the privacy rights of the study participants, especially in the biomedical sciences. On the other hand, for an available data set to be a useful contribution to the scientific community, it has to be findable and accessible with reasonable effort. Therefore, using the R Shiny library, we designed and implemented a software for data discovery and feasibility analyses with compliance to regulatory and contractual regulations. Due to its genericity, it was successfully tested with heterogeneous data sets and ultimately applied to the data and biomaterial of the German Center for Cardiovascular Research (DZHK). The resulting tool - named the Feasibility Explorer - is publicly available and can be used by researchers to get an overview of data and biomaterial available in the DZHK and to select collectives in the process of submitting a usage application. To implement the rights of participants and original authors, data is integrated by querying the informed consent and not persistently stored. All calculations on the data are performed server-sided and only aggregated information is send to a client, whereas the extent of information was strictly limited to a necessary minimum that allows an applicant to assess whether an application is worthwhile.
机译:资助机构和实地专家促进重用科学数据和生物材料超出原始项目的范围。然而,研究数据的可用性受到原作者的利益的限制以及研究参与者的隐私权,特别是在生物医学科学中。另一方面,对于可用的数据被设定为对科学界的有用贡献,它必须具有合理的努力。因此,我们使用R闪亮图书馆,我们设计并实施了一种数据发现和可行性分析的软件,并遵守法规和合同法规。由于其常见性,它被异质数据集成功测试,并最终应用于德国心血管研究中心的数据和生物材料(DZHK)。由此产生的工具 - 可公开可用,可以通过研究人员使用,并可以使用DZHK中提供的数据和生物材料的概述,并在提交使用申请过程中选择集体。要实施参与者和原始作者的权利,通过查询知情同意并且不持久存储来集成数据。对数据的所有计算都是执行服务器的,并且仅将聚合信息发送给客户,而信息的程度则严格限制在允许申请人评估申请是否值得的最低限度。

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