NIH Taking First Steps to Huge Precision Medicine Project

The Obama administration is moving ahead with a major project to learn how to better tailor treatments and preventive care to people's genes, environment and lifestyle.

As part of the Precision Medicine Initiative, the National Institutes of Health plans to be gathering data from at least 1 million volunteers by 2019, work that will go beyond standard medical exams to include even day-to-day wellness information gathered from smartphones or wearable sensors.

At a White House summit Thursday, the NIH is announcing first steps to set up that massive database so it can begin recruiting soon.

"For most of history, medicine has been based on trying to identify what works for the average person. We're all different. This one-size-fits-all approach is far from optimal," Dr. Francis Collins, NIH's director, told reporters.

The goal is to "empower any person, anywhere in the U.S., to raise their hand and volunteer to participate" in the PMI Cohort Program, he said.

NIH said is it providing funding to Vanderbilt University for a pilot project to learn how best to attract those volunteers, how to collect the data, and what findings about their own health participants want in return. Vanderbilt will work in collaboration with advisers from Verily, formerly Google Life Sciences.

Also, Collins said NIH is beginning work to make it easier for patients to access their electronic health records and share them with researchers.

President Barack Obama proposed the initiative last year, saying it would help doctors get the right treatment to the right patient at the right time. Obama is asking Congress for $309 million next year to scale up the initiative, almost all of it for NIH.

Lots of research already is underway, especially in cancer where some patients undergo molecular tests to predict which drugs will best match their tumor. The American Cancer Society says it's not clear yet if insurance coverage is a barrier to some of the early steps toward personalized care, so-called targeted therapies.

But with the cost of gene testing dropping, Collins has said now is the time for researchers to try homing in on a variety of diseases.

The precision medicine database will use data from patients already enrolled in other genomic studies as well as people who directly volunteer, and Collins said a goal is to enroll 79,000 by year's end.