The Precision Medicine Initiative, announced in President Obama’s State of the Union address, includes a push to assemble a million volunteers’ genetic information to improve the understanding of genomics. To better inform patients about the complexities of being enrolled in the research, the NHGRI has updated its online informed consent resource to include more information about the science.
“Over the past five years, dramatic progress in our understanding of the genome, changes in research approaches and an evolving cultural and policy landscape have contributed to new considerations for consent in genomic research,” said Kate Saylor, health science policy analyst in NHGRI’s Policy and Public Analysis Branch, in a news release. “All of these changes have called for updates to the online tool.”
Changes include more information about the scope of informed consent, sample and storage data, return of results, research involving children, privacy and confidentiality. The updating process included input from more than 20 external experts in a variety of fields.
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