NIH pushes forward in Obama's $215M 'precision medicine' plan

President Barack Obama

The National Institutes of Health is pressing ahead with plans to gather genetic information on 1 million Americans under President Barack Obama's Precision Medicine Initiative, angling to kick off the ambitious project next year.

The NIH's Advisory Committee to the Director has come up with a plan to build the necessary infrastructure needed for such an undertaking, making recommendations on just how to manage recruitment, data analysis and biological specimens. The committee's report is now in the hands of NIH Director Francis Collins, who said he plans to act immediately on their recommendations and start enrolling patients as soon as possible.

The NIH project is a major cornerstone of Obama's proposed Precision Medicine Initiative, unveiled in January, which is an effort to create a huge pool of patient data and make it available to researchers, helping them better understand the underlying causes of disease and develop treatments that target genetic variants. Obama has hailed the advent of targeted therapies as "one of the greatest opportunities for new medical breakthroughs that we've ever seen" and likened his plan to the Human Genome Project, the 13-year, $3 billion effort that formed the bedrock of modern genomics.

Now NIH says it's on track to firm out the early stages of the effort this year and begin patient enrollment in 2016, with the goal of reaching the 1-million-patient mark within three or four years.

"Many factors have converged to make now the right time to begin this ambitious project," Collins said in a statement. "Americans are engaging in improving their health and participating in health research more than ever before, electronic health records have been widely adopted, genomic analysis costs have dropped significantly, data science has become increasingly sophisticated and health technologies have become mobile. We have to seize this moment to invest in these promising scientific opportunities to help Americans live healthier lives."

Obama has requested $215 million in fiscal 2016 to fund the initiative, earmarking $130 million for the NIH to bankroll the first steps of recruiting and sequencing patient volunteers. He wants to grant $70 million to NIH's National Cancer Institute to help decode which genes drive tumor growth and spotlight new therapies to block them; $10 million for the FDA to develop the technology and expertise it will need to regulate such targeted treatments; and $5 million for the Office of the National Coordinator for Health Information Technology, which will work to protect patient privacy and data security as the project comes together.

- read the report (PDF)
- here's the NIH's statement