Obama’s precision medicine initiative will aim to enroll a large number of people in a genetic database representing the U.S. population.

Obama’s precision medicine initiative will aim to enroll a large number of people in a genetic database representing the U.S. population.

Amy West/Flickr (CC BY 2.0)

NIH’s 1-million-volunteer precision medicine study announces first pilot projects

President Obama’s huge 1-million-person long-term health study is getting started. Today, the White House and National Institutes of Health (NIH) announced several pilot projects, including one to work out how to recruit hundreds of thousands of volunteers online. A Google company, Verily, will offer technical help.

Obama announced the cohort study just over a year ago as part of his Precision Medicine Initiative (PMI). Today, he will attend a White House summit with 170 participants to promote the PMI, which attempts to tailor medical treatments to individuals. The cohort program is the largest piece of the PMI: A 1-million-volunteer health study that will probe the interplay among genetics, lifestyle factors, and health.

Vanderbilt University in Nashville has won an award to perform a pilot study on how to recruit about one-third of the participants directly—anybody will be able to “raise their hands,” said NIH Director Francis Collins in a call with reporters. The university will work out how to engage participants with a website and a phone line for signing up. Verily, the former Google Life Sciences (renamed in December 2015), in Mountain View, California, will advise the project.

The main components of the PMI cohort program won’t be announced until this summer, however. They will include about a half-dozen awards to health provider organizations that are expected to recruit the bulk of the participants. NIH will also announce a coordinating center and DNA bio bank.

NIH aims to enroll the cohort’s first 79,000 participants this year, including “a very tentative” 50,000 through direct recruitment, Collins says. Total enrollment is set to reach 1 million by the end of 2019. Collins says the study will be “the largest, most ambitious research project of this sort ever undertaken.”

NIH also announced a plan to work with federally funded community health centers to find cohort volunteers from underserved groups; an ethics review board for the cohort study; and a pilot project to work with companies on apps for allowing people to share their data for research. Meanwhile, the Veterans Administration’s Million Veteran Program, which has recruited 450,000 volunteers so far, is opening up that project to men and women on active duty.

Also today, the White House announced a batch of projects being launched by some 40 universities, patient groups, companies, and others to promote personalized medicine. For example, several health care providers pledge to give patients access to their data, and Stanford University in Palo Alto, California, is releasing the genomes of 77 Iranian-Americans who agreed to let their DNA be used for research.

The PMI cohort program will cost $130 million this year, and the Obama administration had requested $230 million in 2017. The costs will then rise to about $330 million a year, NIH officials say, bringing the total to more than $1 billion for the first 4 years.

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