Wanna Help The President

by Alicia Lu

If you've ever wanted to become a study participant for a good cause, now's your chance. There's no higher calling than helping out the president, right? On Friday, the president will propose his "Precision Medicine Initiative," which would analyze the DNA of one million Americans in order to better understand the disease and how to treat it. The massive study would draw from a pool of people already participating in genomic studies, plus new volunteers who want to take part in something that could change cancer treatment as we know it.

Ahead of President Obama's announcement, Dr. Francis Collins, director of the National Institutes of Health (NIH), gave an outline of the initiative during a press conference on Thursday. The study, for which Obama proposed $215 million as part of his 2016 budget, will initially focus on cancer, with the goal of studying a range of diseases in the long term. Collins explained that the decision to start with cancer is because it's such a lethal disease, but also to build on the significant advances that targeted medicine used to treat cancer has already made.

At the State of the Union, Obama teased the initiative:

Tonight, I'm launching a new precision medicine initiative to bring us closer to curing diseases like cancer and diabetes — and to give all of us access to the personalized information we need to keep ourselves and our families healthier.

In a briefing on Thursday, Jo Handelsman, associate director for the White House Office of Science and Technology Policy, said that the study was designed as part of a continued shift away from "one-size-fits-all" medicine and toward targeted medicine, or precision medicine. She described precision medicine as "a game-changer that holds the potential to revolutionize how we approach health in this country and around the world."

Here's everything you need to know about this potentially historic study.

Where The Genes Will Come From

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The study will require examining the genomic data of one million people, which comes with a hefty price tag — $1,000 per genome to be exact, which would amount to $1 billion if the researchers were building a gene bank from scratch. That's why the study organizers plan to combine data from 200 already existing health studies in addition to that of new volunteers. One prime example is the Million Veteran Program, which was initiated in 2011 by the Department of Veterans Affairs to develop personal medicine for veterans. The study has determined the DNA sequences of about 200,000 veterans.

How The Budget Will Be Broken Down

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Of the proposed $215 million, $130 million would be distributed to the NIH to fund the research cohort, $70 million would go to NIH's National Cancer Institute to step up their efforts in identifying molecular causes of cancer and in order to create more effective to drugs.

Another $10 million would fund the Food and Drug Administration in creating official databases that would establish a regulatory structure for the study, and $5 million would go to the Office of the National Coordinator for Health Information Technology to establish privacy standards because and ensure that people's DNA information remains anonymous.

What Makes This Study Different


Officials said in the conference that, unlike past studies, the participants will have access to the information being extrapolated from their genetic makeup. Part of the reason for this is because the study will be ongoing and researchers might need to contact them after the initial decoding if they discover something interesting about their genes later on. Another reason is to give the participants more control over their own health.

John Holdren, director of the White House Office of Science and Technology Policy, said in the conference:

We aren’t just talking about research but also about patients’ access to their own data, so they can participate fully in decisions about their health that affect them.

Images: Wikipedia Commons, Getty Images (3)