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Precision Medicine Initiative Should Enroll Anyone in US Willing to Share Data, Working Group Tells NIH

2015/9/24 9:57:57 Views£º991

Any person living in America, who is willing to share their health data, give a blood sample, and be recontacted for research purposes should be allowed to join the government's Precision Medicine Initiative (PMI), an expert working group has advised the National Institutes of Health.

 

As part of the initiative announced by President Obama in January, the NIH is slated to receive $130 million to put together a cohort of a million or more people whose data —medical records, genetic and metabolomic profiles, microbiomes, environmental exposures, and lifestyle habits — will fuel research and hopefully advance understanding of diseases. This week a working group of experts from academia, government, and industry unveiled a 100-page report outlining how NIH might assemble this research cohort.

 

"With robust implementation, the working group expects the PMI Cohort Program to be able to recruit at least one million participants over about four years," according to the report. NIH Director Francis Collins is hopeful the PMI, which is still awaiting congressional appropriations, can begin enrolling participants as early as next year.

 

A national research pool of 1 million people could be used to gain insights into a range of healthcare questions — from figuring out how genetic and environmental factors conspire in causing diseases to collating data £¬from mobile health gadgets to discover associations between physiologic measures, the environment, and health outcomes.

 

But in order to conduct such queries using data from so many people, the PMI needs this data in electronic health records (EHR), needs to follow people longitudinally, and must use up-to-date technologies to analyze the data, all while protecting participants' privacy and containing costs.

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