place since 1948 in the city of Framingham, MA. There are plenty of others, including the Multiple Myeloma Research Foundation’s CoMMpass study, Duke University’s study of longevity in China, and as detailed here, the Seattle-based Institute for System Biology’s 100K Wellness Project.
But the type of data available, and sheer quantity, is unprecedented, with genetic information relatively cheap and easy to obtain, and people warming to the idea of sharing personal data online and through wearable devices like the FitBit. Gathering every last health detail about a person is becoming more practical every day.
Administration officials said they would lean on existing studies, but look for ways to supplement those studies with their own recruiting efforts by asking volunteers to step forward.
They also said that, whether data were gathered from existing studies or from new recruits, privacy and personal engagement were paramount. Both present thorny questions about technology and policy, which Collins summed up in one example: How do you keep track of participants over the long haul who have the markers for a certain disease, but never get sick? The government would need “broad consent” to recontact them, Collins said. “It would be much more powerful going forward to have that permission.”
How the idea is received by Republicans who control the House and Senate remains to be seen. On one hand, the proposed financial outlay shouldn’t raise the alarm of budget hawks. On the other hand, the last time the Obama administration tried to converge huge databases of health information into a connected system for the country’s benefit, the rollout didn’t go so well; Republicans have used Obamacare as a cudgel against their political rivals at every turn.
But ‘big data’ health specialists counter that government medical institutes like the NIH have had practice and success with data-sharing initiatives. Stanford’s Butte noted that the government has run the Framingham study, “starting well before computers were easily usable.”
Meanwhile, Fred Upton (R-MI), the chair of the House Energy and Commerce committee, is working on a bipartisan initiative called 21st Century Cures with Diana DeGette (D-CO). Upton and DeGette have convened hearings, discussions, and roundtables in Washington and around the country, but there’s still little indication what the upcoming legislation will entail. Handelsman said the White House was looking forward to working with Congress on it.
When asked who would head up the precision medicine initiative, Handelsman laughed off Collins’s joking suggestion that she could be the czar. Precision medicine is a priority for the President, Handelsman said, but the White House’s role would be to “coordinate and connect agencies.”
Collins said one next step is to convene a “blue ribbon panel” to help put the million-person database idea in place. Another is to use $10 million to help the FDA install more flexible regulations for sequencing and diagnostics to speed the approval of targeted therapies.
