An increasing number of investigators are prospectively collecting and storing biological specimens for genomic analysis. Investigators engaged in this research activity are strongly encouraged to comply with genomic data sharing policies, which have historically called for the rapid public release of all generated DNA data.1–3 Making data publicly accessible is cost efficient and maximizes the scientific utility of genomic information. De-identification, or the removal of all personally identifying information prior to public release, has been the traditional means of protecting the privacy of individuals participating in genomic research. However, it has been shown that individuals can be uniquely identified on the basis of just 30–80 statistically independent single nucleotide polymorphisms (SNPs)4 and it is now even possible to identify an individual from pooled or aggregated DNA data. 5 These findings raise concern about the privacy of research participants and have led to the creation of controlled access, or restricted, scientific databases.6, 7
