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

Xconomy National — 

[Updated 1/30/15 1:15 pm. See below.] President Obama’s precision medicine plan just got a bit more precise, and it has a $215 million price tag. Starting with that cash, his administration wants to build a massive national database to study long-term public health trends, gathering head-to-toe health data from a million or more volunteers over their lifetimes.

The million-person idea is the cornerstone detail of the president’s new initiative, which Obama first floated last week during his State of the Union address.

[Quote from Obama added.] At a White House event today, Obama hosted biomedical executives, scientists, and technologists to discuss the long-term study and other details of the initiative, such as more funding for cancer genomic research. “The time is right to unleash a new wave of advances in this area, just like we did with genetics 25 years ago,” Obama said.

The administration’s push brings more attention to what both the private and public sectors have been working toward for years: More detailed health information to help drug companies make finely tuned medicines for individual patients. But it’s also meant to help doctors and patients prevent disease in the first place, or avoid costly interventions—such as diagnostic tests that steer people away from unnecessary surgery or ineffective drugs.

In a few medical areas, such as pediatric genetic diseases or certain cancers, the promise is turning into reality. But for most of the world, personalized medicine remains just a concept.

Atul Butte, a leading bioinformatics expert who also specializes in pediatric medicine, underlined the importance of building systems that lead not only to medical insights, but also to solutions that doctors and patients can put into practice. “The results of analyses will need to be translated into models, predictions, and then positive healthy actions for Americans,” said Butte, chief of Stanford University’s division of systems medicine (and soon to join the University of California, San Francisco). To do all that, he said, will require “novel ways to analyze data and communicate risks and change individual behaviors.”

Atul Butte

Atul Butte

The administration plans to spend a relatively meager sum to promote the initiative, at least at first, with $215 million tucked into its upcoming budget proposal for the 2016 fiscal year.

The majority, $130 million, would go to the National Institutes of Health to build the national research database. The NIH’s National Cancer Institute would get $70 million to continue work on the genetic underpinnings of cancer. The final $15 million would go to the FDA for new regulatory tools and the Office of the National Coordinator for Health Information Technology to develop better ways to share data and protect privacy across disparate systems.

It’s unclear how the database project would incorporate private sector work, from studies conducted by health providers to massive sequencing projects like the one underway at Human Longevity, a San Diego startup from J. Craig Venter.

In a briefing yesterday with reporters, Jo Handelsman, associate director for science at the White House Office of Science and Technology Policy, said the national long-term database would be more than a “biobank”—the description used in a Science magazine report that broke the story early Thursday—because it wouldn’t be “a single repository for data or samples.” Instead, it would link together several ongoing studies, “more like a distributed Internet approach.”

That’s a huge task, and an ambitious one, which NIH director Francis Collins acknowledged. “The interoperability will be a big challenge,” he said, not least of which is the puzzle of “how to glue electronic medical records together.”

[Quote from Obama added.] And it will all have to be done with security and privacy as a priority. Obama told the crowd gathered Friday that privacy experts will be part of the design process “from the ground up, making sure we harness these new technologies in a more responsible way.”

At every turn, making all the data line up and the systems talk to each other will be tough. “Different studies often capture different dimensions of phenotype”—physical, measureable traits—“even items with the same or similar name,” said David Shaywitz, chief medical officer of DNANexus, a Mountain View, CA-based company that provides cloud-based genomic data sharing and analysis tools.

As an example, one study might measure patients’ average levels of the bad kind of cholesterol (low-density lipoprotein, or LDL), another study might measure the highest levels, another might use another parameter, “and it might all be [categorized] under ‘LDL,'” Shaywitz wrote via email while flying to the White House event.

“It’s also true for genetic data,” wrote Shaywitz. “The way data are analyzed in one study might not be the same way they’re analyzed in another.”

Making longitudinal studies talk to each other is a huge challenge, but the studies themselves are nothing new. The most famous in the U.S. has been taking … Next Page »

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  • JB Smith

    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.

  • JB Smith

    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.