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Obama Wants You (And 1 Million Others) For ‘Precision’ Health Data

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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.

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2 responses to “Obama Wants You (And 1 Million Others) For ‘Precision’ Health Data”

  1. JB Smith says:

    The American Reinvestment and Recovery Act is the worst scam ever perpetrated on the American people. Former U. S. Surgeon General Regina Benjamin Warns: Biochips Hazardous to Your Health: Warning, biochips may cause behavioral changes and high suicide rates. State Attorney
    Generals are to revoke the licenses of doctors and dentists that implant chips
    in patients. Chip used illegally for GPS, tracking, organized crime, communication and torture. Virginia state police have been implanting citizens without their knowledge and consent for years and they are dying!
    Former Defense Advanced Research Projects Agency (DARPA) director and now Google Executive, Regina E. Dugan, has unveiled a super small, ingestible microchip that we can all be expected to swallow by 2017. “A
    means of authentication,” she calls it, also called an electronic tattoo, which
    takes NSA spying to whole new levels. She talks of the ‘mechanical mismatch problem between machines and humans,’ and specifically targets 10 – 20 year olds in her rant about the wonderful qualities of this new technology that can stretch in the human body and still be functional. Hailed as a ‘critical shift for research and medicine,’ these biochips would not only allow full access to insurance companies and government agencies to our pharmaceutical med-taking compliancy (or lack thereof), but also a host of other aspects of our lives which are truly none of their business, and certainly an extension of the removal of our freedoms and rights.
    The ARRA authorizes payments to the states in an effort to encourage
    Medicaid Providers to adopt and use “certified EHR technology” aka
    biochips. ARRA will match Medicaid $5 for every $1 a state provides. Hospitals are paid $2 million to create “crisis stabilization wards” (Gitmo’s) where state police torture people – even unto death. They stopped my heart 90 times in 6 hours. Virginia state police have murdered so many already and admit to it!
    Mary E. Schloendorff, v. The Society of New York Hospital 105 N. E. 92, 93 (N. Y. 1914) Justice Cardozo states, “every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent, commits an assault, for which he is liable in damages. (Pratt v Davis, 224 Ill. 300; Mohr v Williams, 95 Minn. 261.)
    This case precedent requires police to falsely arrest you or kidnap you and call you a mental health patient. You can also be forced to have a biochip if
    you have an infectious disease – like Eboli. Coalition of Justice vs the City
    of Hampton, VA settled a case out of court for $500,000 and removal of the
    biochip. Torture is punishable by $1,000 per day up to $2 million; Medical
    battery is worth $2.05 million. Come to Virginia and get your money! They can be held personally liable under color of the law.

  2. JB Smith says:

    The brain initiative and the gnome initiative were just to implant you with a biochip and destroy your health. They are practicing genocide in Virginia. Just ask the criminal secretary of public safety. I don’t know what she prefers most, torture or murder.