NIH head: Technology will help drive Precision Medicine Initiative

The path forward for the Precision Medicine Initiative that President Barack Obama announced in his State of the Union speech in some respects has yet to be invented, but the time is right for this bold step, writes Francis Collins, director of the National Institutes of Health, in a perspective article for The New England Journal of Medicine.

The initiative is expected to involve of biologists, physicians, technology developers, data scientists, patient groups and others, and has two main components: a near-term focus on cancers and a longer-term aim to generate knowledge about a range of diseases. Both efforts will tap into the growing trends of social media, mobile devices and Americans' growing desire to be active partners in medical research.

The cancer research will require analyzing many more cancer genomes, and building a  "cancer knowledge network" with the massive amounts of data stored digitally and available in comprehensible ways for scientists, healthcare workers and patients," Collins says.

The broader initiative, he adds, also will require developing creative new approaches for detecting, measuring and analyzing a wide range of biomedical information gathered in myriad ways, including clinical trials, electronic medical records, and other means. Mobile health technologies, for instance, could be used to improve strategies for preventing and managing chronic diseases, according to Collins.

The project, he says, will require evaluating the most promising approaches in much larger numbers of people over longer periods.

The plan calls for amassing information on 1 million or more American volunteers who will consent to sharing a wide range of their data from their electronic health records.

How to maintain patient privacy will be among the regulatory issues to be worked out.

Indeed, "the knotty problem is how to promote rapid innovation while ensuring safety and efficacy," writes Eric S. Lander, Ph.D., co-chair of Obama's Council of Advisors on Science and Technology, in another opinion piece in published in NEJM.

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