Precision medicine will require transparent software, 'exquisite' data

Figuring out how to piece together data from a hodgepodge of clinical studies will be one of the first items on the agenda for President Barack Obama's Precision Medicine initiative, Francis Collins, director of the National Institutes of Health, told Reuters.

Various research organizations have expressed interest in participating in the program, including Kaiser Permanente, the Mayo Clinic, and the U.S. Department of Veterans Affairs, Collins said during an interview at the Future of Genomic Medicine conference last week in La Jolla, California.

"That doesn't necessarily mean all of the data is in one place being operated by the same software," he said, but the software has to be transparent, and the data must be what he described as "exquisite."

The initiative, which aims to develop treatments targeted to an individual's genetic makeup, will have two main components: a near-term focus on cancers and a longer-term aim to generate knowledge about a range of diseases.

The cancer research will require building a digital "cancer knowledge network," while the broader initiative will require developing creative new approaches for analyzing a wide range of biomedical information gathered from clinical trials, electronic medical records, and other sources, Collins wrote in a perspective article for The New England Journal of Medicine.

Collins has designated NIH Deputy Director Kathy Hudson and Yale geneticist Richard Lifton to lead a panel determining the path forward, Reuters reports.

Collins expects to have "a good sense of how we want to start this off" by September or October, based on the panel's work.

NIH is slated to receive $130 million for genomic testing on at least 1 million Americans who agree to share their data. Additionally, the National Cancer Institute will receive $70 million, the Food and Drug Administration $10 million and the Office of the National Coordinator for Health Information Technology will receive $5 million to implement interoperability and privacy standards for the health data involved.

FDA Commissioner Margaret Hamburg has said the agency will have to modernize regulations that have supported a "one-test, one-disease paradigm" in order to harness the potential posed by next-generation sequencing.

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