Recognizing the unprecedented pace of scientific progress in this field, NIH has designed its policies on data sharing in GWA studies to adapt to rapid technical advances. For example, data summaries and other group-level data such as allele frequencies and association statistics were initially provided in the open-access portion of dbGaP, in the belief that grouped data carried no threats to individual privacy. An innovative analysis for resolving the presence of an individual’s DNA in a mix of DNA (as from a mass disaster) subsequently showed that an individual could be determined to have contributed to grouped allele frequency data with high reliability if one had data on that individual’s genotypes at hundreds of thousands of SNPs (58). NIH responded swiftly to remove these data sets from open access and place them behind the controlled-access process, and to notify other major data providers as well, who took similar actions (59). Data access policies will continue to evolve with ongoing scientific advances in the field, to ensure that state-of-the-art data can be distributed and used in the most responsible and productive manner.
