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Sep 10, 2014

“Immortal” Cells from Henrietta Lacks Lead to Updated Rules on Genomic Data Sharing

Posted by in category: life extension

By Richard Van Noorden and Nature magazine — Scientific American

Scientists who work on genomics and are funded by the US National Institutes of Health (NIH) must post their data online so that others can build on the information, the agency has said in an update to its guidelines.

The change, which expands the remit of an earlier data-sharing policy, is not expected to drastically alter research practices — many genomics researchers are accustomed to sharing their data. But the latest policy, released on 27 August, gives clearer instructions for gaining the informed consent of study participants. The NIH will now require researchers to tell study participants that their data may be broadly shared for future research.

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Comment — comments are now closed.

  • George Abney on September 10, 2014 4:05 pm

    Informed consent is not a waiver of vested interest (tissues/et al) best defended by a skilled attorney sitting in defense of research subject participant interests… in the contest of commercial development and medical products/systems design ownership debate.