UC Santa Cruz, 1156 High Street, Mailstop: Genomics Institute, Santa Cruz, CA, 95064, USA.
Sci Data. 2019 Jun 20;6(1):98. doi: 10.1038/s41597-019-0096-4.
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.
尽管越来越多的人认识到基因组数据共享对于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特征和质量的标准，基因组数据共享仍然受到阻碍。只有经过数月的识别、使用许可、承诺使用条款限制使用和共享、下载和评估质量，才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，以增强所有儿科癌症患者的数据共享和结果。
