There are great scientific benefits to the public availability of genomic data as expressed by Francis Collins: “free and open access to genome data has had a profoundly positive effect on progress”.18 However, data sharing policies must balance the scientific benefits with ethical obligations to participants. This study raises the important question of whether existing policies achieve an appropriate balance or whether they are overly restrictive. In this study, more than half of the participants consented to the public release of their DNA data, and nobody declined enrollment when participation was conditioned on public data release. This suggests that mandating full public data release would maximize data availability. However, it would not be consistent with the preferences of the 47% of study participants who chose a more restrictive data sharing option.
