Barriers to accessing public cancer genomic data
Barriers to accessing public cancer genomic data
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DOI：
10.1038/s41597-019-0096-4
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发表时间：
2019-06-20
期刊：
影响因子：
9.8
通讯作者：
Bjork, Isabel M.
中科院分区：
文献类型：
--
作者：
Learned, Katrina;Durbin, Ann;Bjork, Isabel M.
尽管越来越多的人认为基因组数据共享对基因组研究至关重要，但由于缺乏关于时间、患者隐私、使用协议标准以及数据表征和质量的标准，基因组数据共享受到阻碍。只有经过几个月的识别，许可使用，承诺限制使用和共享，下载和评估质量的条款，才有可能知道数据集是否可以使用。在本文中，我们根据Treehouse的经验评估了数据共享的障碍，并为使用协议标准，数据特征和元数据标准化提供了建议，以加强所有儿科癌症患者的数据共享和结果。
Although increasingly recognized as critical to genomic research, genomic data sharing is hindered by an absence of standards regarding timing, patient privacy, use agreement standards, and data characterization and quality. Only after months of identifying, permissioning for use, committing to terms restricting use and sharing, downloading, and assessing quality, is it possible to know whether or not a dataset can be used. In this paper, we evaluate the barriers to data sharing based on the Treehouse experience and offer recommendations for use agreement standards, data characterization and metadata standardization to enhance data sharing and outcomes for all pediatric cancer patients.