Obama, NIH Announce Big Data Gathering Push for Precision Medicine

By John Russell

July 7, 2016

One could be forgiven for experiencing a bit of hopeful, skepticism in response to U.S. President Barack Obama Administration’s statement in May regarding re-energizing the “War Against Cancer.” The war against cancer is a many-decades old effort with mixed results – great progress in many areas but matched with disappointment in others. Winning the war still seems rather far-off. The new effort, to be led by Vice President Biden, is part of Obama’s Precision Medicine Initiative.

Precision Medicine is a powerful idea – mostly marshaling insights from varying genomics technologies and research (writ large) to “personalize” and improve the efficacy of therapy for very many illnesses. Much of what has been missing so far are large enough datasets to reflect true population-scale dynamics. Later today, according to a statement written by Obama and appearing in the Boston Globe and a report yesterday in Forbes.com, NIH will mount a new initiative to accelerate gathering needed datasets.

Obama wrote in the Boston Globe, “The National Institutes of Health is making major investments in partnerships across the country, including with the Broad Institute in Cambridge, to gather data that could lead to lifesaving discoveries. Building in strong privacy and security protections from the start, NIH is teaming up with regional health care providers and community-based health clinics to sign up a million or more volunteers from all walks of life. The health, environmental, and lifestyle information this diverse group will provide will be analyzed by qualified scientists to generate new insights and one day bring us closer to curing diseases like cancer and diabetes.”

Yesterday, Forbes.com provided a few more details: “The National Institutes of Health will spend $55 million in a single year to begin a study of a million American volunteers who will consent to have their bodies measured in myriad ways to figure out how genetic and environmental risk factors interact to cause disease. On a conference call this evening, NIH Director Francis Collins said the project “has the potential to truly transform the practice of medicine” and predicted that understanding individual differences will allow doctors to better prevent and treat illness. In an unprecedented effort, it will try to return all the data that is collected to the study participants. Meanwhile, the Food and Drug Administration is releasing two draft guidance documents that could smooth the regulatory path of tests that make use of DNA sequencing to diagnose disease. Update: The FDA draft guidances can be found here and here.”

Many technology details – where the data will be stored and how life science and biomedical researchers will gain access to the data – are not yet clear. The Forbes reported cited

  • “Data analytics for the project will be handled by a team at Vanderbilt University in Nashville, Tenn.; Verily, the life science arm of Alphabet (formerly Google); and the Broad Institute in Cambridge, Mass. They will receive a combined first-year grant of $14 million.”

The largest grant, $120 million over the course of five-plus years, will go to the Scripps Research Institute in La Jolla. Scripps will be charged with creating mobile and web applications to collect data from individuals, and to return that data to patients. This grant is believed to be the largest ever to a single researcher at that institution.

UC San Diego computer scientist Larry Smarr — a major proponent of digital medicine — saw opportunity and obstacles ahead. “Given the natural variation among people, it is necessary to get personalized data on large numbers of participants to move the precision medicine program forward,” said Smarr in a report in yesterday’s San Diego Tribune Union.

“Of course, no one person can possibly read through the millions of data sets that will be generated by this program, so there will need to be a parallel effort in data analytics and machine learning to bring the patterns out of the sea of numbers,” added Smarr, who founded Calit2, a UC San Diego tech incubator. More details about the new data gathering effort are likely to be forthcoming over the next week or so.

Links to Forbs.com article: http://www.forbes.com/sites/matthewherper/2016/07/06/obama-seeks-to-make-mark-on-genetic-medicine/#1a382e442b0d

Links to Boston Globe Obama statement: http://www.bostonglobe.com/opinion/2016/07/06/medicine-next-step/tPdgf4XfOHvUckHpTTbuvN/story.html

Link to San Diego Tribune Union article: http://www.sandiegouniontribune.com/news/2016/jul/06/NIH-scripps-topol/

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