The Precision Medicine Initiative (PMI) Working Group of the Advisory Committee to the (NIH) Director (ACD) has recently presented a detailed report to the ACD with recommendations on how to a build and manage a diverse research cohort of 1 million people for the PMI. The report discusses a framework for policies affecting patient recruitment, specimen collection and storage, technology infrastructure, operations, privacy, security and sharing of data between researchers and cohort participants. A notable recommendation is the use of arrays that prioritize the inclusion of known pharmacogenetic variants. The report also recommends including anyone who is willing to participate in the PMI, and emphasizes the importance of having a diverse cohort that is representative of the general population of the United States.The ACD unanimously agreed to accept the PMI Working Group’s report, and according to Dr. Russ Altman, a member of the ACD, "Direct participation is clearly the alternative in this age of consumer empowerment.”
Read more about the PMI Working Group’s report, including an interview with Dr. Russ Altman with GenomeWeb below:
https://www.genomeweb.com/sequencing-technology/precision-medicine-initiative-should-enroll-anyone-us-willing-share-data
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