Debate: When to release genetic data?

Image: George Gastin via WikimediaAs 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

Bob Grant
Bob Grant

Bob Grant is Editor in Chief of The Scientist, where he started in 2007 as a Staff Writer.

View full profile.


Learn about our editorial policies.

Aug 2, 2010
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...

Download Flash player to listen to The return of genetic results: Part I


The return of genetic results: Part I

Download Flash player to listen to The return of genetic results: Part II


The return of genetic results: Part II

Download Flash player to listen to The return of genetic results: Part III


The return of genetic results: Part III




Interested in reading more?

Become a Member of

Receive full access to more than 35 years of archives, as well as TS Digest, digital editions of The Scientist, feature stories, and much more!
Already a member?