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Rare Sharing of Data Led To Results In Alzheimer's Research 159

Posted by Soulskill
from the never-forget dept.
jamie passes along a story in the NY Times about how an unprecedented level of openness and data-sharing among scientists involved in the study of Alzheimer's disease has yielded a wealth of new research papers and may become the template for making progress in dealing with other afflictions. Quoting: "The key to the Alzheimer's project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world. No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort. 'It was unbelievable,' said Dr. John Q. Trojanowski, an Alzheimer's researcher at the University of Pennsylvania. 'It's not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.'"
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Rare Sharing of Data Led To Results In Alzheimer's Research

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  • by Anonymous Coward on Friday August 13, 2010 @05:05PM (#33245832)

    My new definition of irony:

    A story on great leaps in progress being made because of openness being closed off behind a paywall.

    Well, it's not a paywall. Registration is free.

    That said, it is still annoying.

  • by Surt (22457) on Friday August 13, 2010 @05:16PM (#33245986) Homepage Journal

    BugMeNot is your friend.

  • by dan828 (753380) on Friday August 13, 2010 @05:45PM (#33246308)
    It's not that Darwin didn't want to publish his ideas, he shared them with his friends readily enough. He just didn't want to deal with the religious and political shit storm that his work was going to cause. It wasn't until he was about to get scooped by Wallace that his friends convinced him to jointly present a paper with Wallace.
  • by Anonymous Coward on Friday August 13, 2010 @05:46PM (#33246326)

    Well, it's not a paywall. Registration is free.

    That said, it is still annoying.

    For the NYTimes you can just use referrer spoofing (something you should be doing anyway to increase your privacy).

    Get the RefControl add-on [mozilla.org] and set it to use "http://google.com/" as the referrer for anything at the site "nytimes.com"

    I've doing that for many years without a hitch. For all other sites, I tell RefControl to default to "<Forge> (3rd Party)"

  • by Paul Fernhout (109597) on Friday August 13, 2010 @07:23PM (#33247098) Homepage

    Something I wrote on that begins: http://www.pdfernhout.net/open-letter-to-grantmakers-and-donors-on-copyright-policy.html [pdfernhout.net]
    "Foundations, other grantmaking agencies handling public tax-exempt dollars, and charitable donors need to consider the implications for their grantmaking or donation policies if they use a now obsolete charitable model of subsidizing proprietary publishing and proprietary research. In order to improve the effectiveness and collaborativeness of the non-profit sector overall, it is suggested these grantmaking organizations and donors move to requiring grantees to make any resulting copyrighted digital materials freely available on the internet, including free licenses granting the right for others to make and redistribute new derivative works without further permission. It is also suggested patents resulting from charitably subsidized research research also be made freely available for general use. The alternative of allowing charitable dollars to result in proprietary copyrights and proprietary patents is corrupting the non-profit sector as it results in a conflict of interest between a non-profit's primary mission of helping humanity through freely sharing knowledge (made possible at little cost by the internet) and a desire to maximize short term revenues through charging licensing fees for access to patents and copyrights. In essence, with the change of publishing and communication economics made possible by the wide spread use of the internet, tax-exempt non-profits have become, perhaps unwittingly, caught up in a new form of "self-dealing", and it is up to donors and grantmakers (and eventually lawmakers) to prevent this by requiring free licensing of results as a condition of their grants and donations. "

    I sent a longer version to the Markle Foundation in 2001, two years before this open partnership on Alzheimer's started:
        http://www.pdfernhout.net/on-funding-digital-public-works.html [pdfernhout.net]
    Maybe it helped? :-)

    By the way, adequate vitamin D and eating organic whole foods heavy on vegetables, fruits, and beans (with a few selected supplements like B12 and DHA) may help delay Alzheimer's and other forms of dementia greatly; see:
    http://www.vitamindcouncil.org/treatment.shtml [vitamindcouncil.org]
    http://www.diseaseproof.com/archives/cat-alzheimers-disease.html [diseaseproof.com]

    So, the answers are out there even without people cooperating to make some magic bullet. The cooperation through basic publications and the hard work of a few key people like Dr. John Cannell and Dr. Joel Fuhrman putting together such information has made huge difference. Now if just more people would pay attention to these findings -- but unfortunately there is not much profit in emphasizing getting mdoerate sunlight exposure (or taking cheap supplements) and eating right, so that is another part of the partadigm problem of a for-profit health care and R&D system.

    Moderate exercise and some other things can help too (see Dr. Andrew Weil for the bigger picture of the holistic side fo health, though his nutrition advice is not quite as good as the above links) but again, there is not the huge profits in that as, say, doing triple bypasses.

  • by dpilot (134227) on Friday August 13, 2010 @10:46PM (#33248438) Homepage Journal

    Has the cynic in you heard about the new prostate cancer vaccine? They've decided to charge $90k for it, because that's the average cost of treatment for prostate cancer, and people should be willing to pay just as much to avoid the treatment as they would to have it. I'm not kidding.

    **Pardon me, it's not $90k, it's $93k. http://www.usatoday.com/news/health/2010-04-30-prostatevaccine30_ST_N.htm [usatoday.com]
    Reading TFA, the vaccine is a very patient-specific thing, and didn't mention the equivalent-cost pricing. I heard that part on the radio.

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