Sharing data for the public good and protecting individual privacy: informatics solutions to combine different goals

The bioethics advisory committee to the President has recently issued a report emphasizing the importance of protecting health information, particularly the data about an individual's genome.1 The report does not prescribe how to balance the need for sharing information to accelerate discoveries with the potential risk of privacy breach. However, it does mention the potential benefits of data sharing and calls for the development of solutions that minimize the risk of privacy breach. Similarly, a recent report from the NIH's ‘Workshop on Establishing a Central Resource of Data from Genome Sequencing Projects’2 recommends that ‘ sequence/phenotype/exposure data sets ( be ) deposited in one or several central databases .’ Studies on human genomes require good characterization of individual phenotypes, and some of these data may be retrieved from electronic health records. Lessons learned from over a decade of research in privacy technology can help guide solutions to the problem of …