Ohno-Machado Lucila, Farcas Claudiu, Kim Jihoon, Wang Shuang, Jiang Xiaoqian
Division of Biomedical Informatics, University of California San Diego, La Jolla, CA.
AMIA Jt Summits Transl Sci Proc. 2013 Mar 18;2013:128. eCollection 2013.
The NIH-funded iDASH1 National Center for Biomedical Computing was created in 2010 with the goal of developing infrastructure, algorithms, and tools to integrate Data for Analysis, 'anonymization,' and SHaring. iDASH is based on the premise that, while a strong case for not sharing information to preserve individual privacy can be made, an equally compelling case for sharing genome information for the public good (i.e., to support new discoveries that promote health or alleviate the burden of disease) should also be made. In fact, these cases do not need to be mutually exclusive: genome data sharing on a cloud does not necessarily have to compromise individual privacy, although current practices need significant improvement. So far, protection of subject data from re-identification and misuse has been relying primarily on regulations such as HIPAA, the Common Rule, and GINA. However, protection of biometrics such as a genome requires specialized infrastructure and tools.
由美国国立卫生研究院(NIH)资助的iDASH1生物医学计算国家中心于2010年成立,其目标是开发基础设施、算法和工具,以整合用于分析、“匿名化”和共享的数据。iDASH基于这样一个前提,即虽然可以提出强有力的理由不共享信息以保护个人隐私,但也应该提出同样有说服力的理由,即为了公共利益(即支持促进健康或减轻疾病负担的新发现)共享基因组信息。事实上,这些情况并不一定相互排斥:在云端共享基因组数据不一定会损害个人隐私,尽管目前的做法需要大幅改进。到目前为止,保护受试者数据不被重新识别和滥用主要依靠《健康保险流通与责任法案》(HIPAA)、《通用准则》和《遗传信息非歧视法案》(GINA)等法规。然而,保护诸如基因组这样的生物特征数据需要专门的基础设施和工具。