NIH to bank genome-wide association data

Written byAlla Katsnelson

| 1 min read

As of January 25, 2008, researchers conducting genome-wide association studies with NIH funding will be required to submit their data, stripped of information that could identify individual study participants, to the a linkurl:central repository;http://www.genome.gov/Pages/About/OD/OPG/GWASFR-082807.pdf at the National Library of Medicine. The database will allow researchers not connected with an original study to mine another lab?s data in search of further gene associations. linkurl:Plans;http://www.the-scientist.com/news/display/25033/ for such a database were announced last year ? researchers and patient advocacy groups supported the idea, but raised concerns about issues such as participant privacy and the effect on researchers? ability to publish or derive patents from the data. The final rules for submission encourage researchers and institutions to look into obtaining a special dispensation for confidentiality in cases where particularly sensitive data may be obtained for non-legal purposes (like law enforcement agencies or insurance companies). They also promise to provide guidance to ORBs in developing informed consent for study participants, which will necessarily become more complicated. And while the original draft plan stipulated a nine-month exclusivity period during which secondary researchers cannot publish based on the work, that period has been extended to 12 months in the final version. But with genome-wide studies getting published at an ever-increasing rate, complications around such issues are only likely to increase.

NIH to bank genome-wide association data

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