Debate: When to release genetic data?

Image: George Gastin via Wikimedia

As genomic science evolves in an age of increasingly rapid and cheap gene sequencing, more large-scale genetic studies are enlisting thousands of human subjects, who are lending their tissue samples for researchers to probe for the signals of cancer, Alzheimer's or other complex conditions. But as science constructs a clearer picture of how genes affect human health, and study participants become more curious about what their genomes can tell them, an important ethical question arises: When are researchers obligated to return genetic results to participants in genome studies? Last month, a pair of commentaries explored this question in __Science Translational Medicine__. The linkurl:first,;http://stm.sciencemag.org/content/2/37/37cm19.abstract?sid=6cb9dce8-c5b7-4e51-b696-98a857ba6d67 written by Harvard University colleagues linkurl:Isaac Kohane,;http://www.childrenshospital.org/cfapps/research/data_admin/Site113/mainpageS113P0.html an informatician and pediatrician, and bioethicist linkurl:Patrick Taylor,;http://connects.catalyst.harvard.edu/PROFILES/ProfileDetails.aspx?Person=PLT3 stressed the importance of gauging each study participant's preferences and the communicability of the complex information in determining whether or not to release genomic information. The second...