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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 sackvillian (1476885) on Friday August 13, 2010 @05:01PM (#33245784)

    My new definition of irony:

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

  • by Moridineas (213502) on Friday August 13, 2010 @05:13PM (#33245934) Journal

    Back in the day Science and math was shared freely

    Back in what day?

  • by Frans Faase (648933) on Friday August 13, 2010 @05:45PM (#33246322) Homepage

    I think it was also governments who decided that science should be made profitable and not being fully paid by taxes, especially when the costs for science seems to increase more and more. Many scientist nowadays, have no other way then to depend on fundraising, and that can only be done effectively with writing papers. In some fields, for example computer science, there are areas where people put all their energie in writing papers with actually no content, just speculations and promisses. There are incrowds who only visit their own conferences and go on producing papers after papers with no real results at all.

    I have been following research around Alzheimer's Disease in the past four years, because my wife has Early Onset Alzeheimer's Disease (she is only 53), and also in this area, I have encountered papers that present no result, but only talk about a potential application of a certain mechanism, which sole purpose seems to be fund-raising. And in a sense, I do not object against those papers, because if there is one disease that does not receive enough funding, it is Alzheimer's Disease. The costs of Alzheimer's Disease for society as a whole is probable of the same order as that of all forms of cancer together, but only a fraction of the amount of research that is put into cancer is put into Alzheimer's Disease. Especially in western countries, with a relatively large percentage of people over the age of 65, the costs for Alzheimer's Disease are becoming a great burden.

  • by Khyber (864651) <techkitsune@gmail.com> on Friday August 13, 2010 @06:01PM (#33246516) Homepage Journal

    "There is no money to be made in figuring out how the universe works"

    Teleportation? Possibility of warping space to move around the galaxy? No money, what?

  • by hey! (33014) on Friday August 13, 2010 @06:39PM (#33246812) Homepage Journal

    Of course science has never been perfect, but the state of science as we know it today is a peace dividend of the post-Soviet era. That includes the anemic state of space exploration.

    Once upon a time, everything was all about the US vs. the Soviets. Anything decision more complicated than choosing the "Soviet" or "US" was quaintly labeled "multilateral" and dismissed as vaguely tacky and uncooperative. In those days, there was a huge contest to see which form of society was the society could produce the most sustainable progress. We don't get this in modern civilization struggles because Communism had this doctrine of historical determinism. Communism (the communists said) would usher in a golden age for humanity, a society so perfect that history itself would become obsolete.

    So, it was very important to show which economic and political system had the biggest progress balls. Can *you* go to the moon? Can *you* create wonder drugs that horrible diseases? Can *you* discover the fundamental laws of the universe? And we spent a lot of public money on this creative machismo contest. Well, not that much really when you look at what we got out of it, but a lot when you look at how much we're willing to spend to Benefit the Progress of Mankind [tm] today.

    And then, we won.

    Suddenly, the contest wasn't all that important any longer. We had all this expensive to keep running research capability, and no reason to spend the money. And somebody came up with a creative idea that was almost like money for nothing. We'd be able to sustain the growth in our research infrastructure without growing our public investment in it.

    It's hard to realize this today, but the concept of university research institutions as primarily IP generating engines was novel in 1980. It even seemed almost a bit obscene, because only a few years prior academic research was ostensibly all about Benefiting the Progress of Mankind [tm].

  • by Anonymous Coward on Friday August 13, 2010 @07:08PM (#33247002)

    Makes you wonder why U of East Anglia (et al) wouldn't share the global warming data.

  • by Coppit (2441) on Friday August 13, 2010 @07:39PM (#33247254) Homepage

    If it's publicly funded, shouldn't the research results be publicly available?

  • by Lemmy Caution (8378) on Friday August 13, 2010 @08:15PM (#33247532) Homepage

    No, the real reason is institutional. Scientific careers are made by holding your cards close to your chest for as long as possible, then publishing impressive conclusions while still keeping your most important data either cryptic or unstructured. The "business model" is a mess, and it isn't about the misinterpreting boob, it's about the people who *would* understand your work.

    This story (about the breakthrough in Alzheimer's work) is a very good one to spread around, because it will produce some strong pressure to follow suit in other medical fields. Once enough of the right people start to realize that we could make serious in-roads against cancer if a collaborative approach was taken, the forces to change the status quo will become unstoppable.

  • Another reason (Score:1, Interesting)

    by Anonymous Coward on Friday August 13, 2010 @11:24PM (#33248598)

    Don't forget the old adage of "publish or perish", as a professor's worth is not measured in salt but in publications turned out. Thus, a professor that knows their material, makes new discoveries that they share openly, and is an excellent teacher most likely will not make tenure. It is one more reason why text books are such a burden to so many students. (Oh, and for industrial scientists, they have no reason to publish - as you said, it is a for-profit business model so why would you ever publish trade secrets?)

  • Heterodox economics (Score:3, Interesting)

    by Paul Fernhout (109597) on Saturday August 14, 2010 @11:24AM (#33250830) Homepage

    Wow, that all sounds pretty neat and mostly a lot of "hard fun".
    http://www.papert.org/articles/HardFun.html [papert.org]

    And related:
    "Mortgage Free!: Innovative Strategies for Debt Free Home Ownership"
    http://books.google.com/books?id=U8olv7h0of4C [google.com]
    "How to Survive Without a Salary: Learning How to Live the Conserver Lifestyle"
    http://books.google.com/books?id=ImmgMBhdeHkC [google.com]
    "Life After the City: A Harrowsmith Guide to Rural Living"
    http://books.google.com/books?id=Fmq19Hv1fqYC [google.com]

    We live in a somewhat passive solar home, and do a bit of organic gardening (but we can't bear to cut down the beautiful trees where we are to have a bigger spot to garden or more sunlight, although I agree with you about the economics of that -- plus, doing stuff outdoors also saves on entertainment expenses and, as you allude to, gym memberships. :-)

    Karl Marx and his fans (like Simon Clarke in "The Global Accumulation of Capital and the
    Periodisation of the Capitalist State Form")
    http://www.riff-raff.se/en/furtherreading/clarke_global.php [riff-raff.se]
    predicted an extension of credit to keep capitalism going just before it collapsed (whatever one can say about his proposed cures, a lot of Marxian diagnosis of problems with capitalism was accurate).

    Someone just recently sent me this summary about Simon Clarke's writings: "The stages he addresses and ultimately rejects as being too vaguely defined to be considered as true periods are: Mercantilism, Liberalism, Imperialism, Social Democracy, and Monetarism. He identifies (in 1992 or before) monetarism as either being a new phase or (as it turned out) a reassertion of free-market Liberalism that will cause overaccumulation, the solution to which will be imperialism and extension of credit, which will only delay a deeper recession or depression. That's nearly a 20-year-out economic prediction that turned out to be very accurate! (Granted, he didn't offer dates, but he predicted some of the most critical events.)"

    I'm adapting the following from a reply on that.

    Just one more datapoint on that predicted "extension of credit":
    "Debts Rise, and Go Unpaid, as Bust Erodes Home Equity"
    http://www.nytimes.com/2010/08/12/business/12debt.html?src=me&ref=business [nytimes.com]
    as "capitalism hits the fan" (a talk by a Marxist economist)
    http://www.capitalismhitsthefan.com/ [capitalismhitsthefan.com]

    So, agreeing with others, it is a good diagnosis by Marx and fans, up to a point, but poor prescription for current day events, as this essay says from 1971 by Murray Bookchin (someone more into decentralization):
    "Listen, Marxist!" by Murray Bookchin
    http://dwardmac.pitzer.edu/anarchist_archives/bookchin/listenm.html [pitzer.edu]

    A fan of Charles Fourier suggested to me that everything good about Marx came from the earlier Fourier. And Fourier was more into self-reliant living (though at a village level).
    http://en.wikipedia.org/wiki/Charles_Fourier [wikipedia.org]

    Here is a document I put together forty years after Murray Bookchin wrote, and two hundred after Charles Fourier:
    http://knol.google.com/k/paul-d-fernhout/beyond-a-jobless-recovery [google.com]
    The document suggests that there are four majo

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