When given a choice about genomic data sharing, just over half of the participants in this study chose public data release. Genomic data generated during the course of research have traditionally been treated primarily as a community resource and made widely available through publicly accessible scientific databases. Some human DNA data are still available to the general public (e.g., http://hapmap.ncbi.nlm.nih.gov/, http://www.1000genomes.org/page.php), but the vast majority of data are now only available to approved researchers through controlled access databases (e.g., http://www.ncbi.nlm.nih.gov/gap). This policy shift was prompted by evidence of the potential vulnerability of de-identified DNA data4, 5 and related concerns about participant privacy.10, 12 Privacy risks have been carefully considered,13 but until now, there has been little empirical data on stakeholder perspectives to help inform these policy decisions.
