title: Genomes in the cloud: balancing privacy rights and the public good.
abstract: 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.
authors.affiliation: Division of Biomedical Informatics, University of California San Diego, La Jolla, CA.
authors.forename: Lucila
authors.initials: L
authors.lastname: Ohno-Machado
authors.forename: Claudiu
authors.initials: C
authors.lastname: Farcas
authors.forename: Jihoon
authors.initials: J
authors.lastname: Kim
authors.forename: Shuang
authors.initials: S
authors.lastname: Wang
authors.forename: Xiaoqian
authors.initials: X
authors.lastname: Jiang