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

Posted by Soulskill on 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.'"

20 of 159 comments (clear)

  1. This is real science. by Raelus · · Score: 5, Insightful

    Stop trying to replace it with a capitalistic mockery of science.

    --
    "It is the stillest words which bring the storm. Thoughts that come with doves' footsteps guide the world."
    1. Re:This is real science. by Anonymous Coward · · Score: 5, Insightful

      This is one of the reasons the field of astronomy has made such amazing advances. There is no money to be made in figuring out how the universe works so everyone is very open about their work.

    2. Re:This is real science. by immakiku · · Score: 4, Insightful

      Indeed. Back in the day Science and math was shared freely through notes and letters among intellectuals. The scientists of that era actually achieved their potentials for the most part.

      In our time, we have much better ways to communicate, yet our abilities are stifled far below maximum potential because of what appears to be petty reasons

    3. Re:This is real science. by Anonymous Coward · · Score: 4, Insightful

      The mess we have where potentially-useful information is kept secret and proprietary, in the name of profit or even just potential profit.

    4. Re:This is real science. by TheEyes · · Score: 5, Insightful

      The patent craziness.

      For some bizarre reason, the US, the EU, and many other places have decided that it's okay to patent basic concepts: human and animal genes, business methods, math (also known as software patents), etc, rather than the end-stage products that patents were originally meant to cover. As a result, many fields of innovation are grinding to a halt, as people scramble to place roadblocks and paywalls across the road of innovation. Biology can't go anywhere because dozens of different groups have patents on basic testing procedures and even the genes themselves. Computer programmers can't get anywhere because programming has become a minefield, where bits arranged in certain ways can suddenly see you being sued for millions of dollars.

      The moment the walls are lowered, even for a short period in a limited field, great things can be accomplished in a short amount of time, but the exceptions will remain exceptions if the non-innovators keep thinking there's profit to be made in continual delay.

    5. Re:This is real science. by bunratty · · Score: 5, Insightful

      Back when Tycho Brahe refused to give Kepler access to his observations of the night sky and Darwin didn't publish his ideas until decades after he first had them. And when Mendel fudged his data about heredity and Millikan threw away data he didn't like about the charge of an electron. Oh, wait.

      --
      What a fool believes, he sees, no wise man has the power to reason away.
    6. Re:This is real science. by xMilkmanDanx · · Score: 5, Insightful

      +9000

      all fundamental science should NEVER be patentable. mother nature has prior art

      --
      I am not in anyway affiliated with Max Cannon
    7. Re:This is real science. by immakiku · · Score: 5, Insightful

      In those cases the reasons are all personal, whereas now the hiding and protecting of research seems codified into our society.

    8. Re:This is real science. by bunratty · · Score: 2, Insightful

      You're greatly exaggerating by saying biology and computer programming can't get anywhere because of patents. It's rare to have a problem with software patents. When there is a problem, it makes the news on Slashdot. And then again the next week. And the month after that.

      --
      What a fool believes, he sees, no wise man has the power to reason away.
    9. Re:This is real science. by immakiku · · Score: 2, Insightful

      Ideas are patented, but actual research is still hidden until it's profitable. Even then the research is not 100% made public. Compare this to the RFC style progression of research in which people had no reservations about participating.

    10. Re:This is real science. by Anonymous Coward · · Score: 1, Insightful

      It's not rare it just doesn't always make court as sometimes it has the intended effect of keeping the competition at bay. I've consulted at 2 different companies that decided to take less than optimal solutions in one case and in another abandon a business expansion plan due to patents held by software patents held by outside companies who were known to be litigious. Both companies were small shops where they couldn't afford a protracted legal battle so they found less risky places or ways to invest their capital. In the case of the first it eventually went out of business though this was unrelated to the issue at hand. In the second case I think they're still around but I haven't talked to anyone there in probably 5 years. Since consulted at only 14 clients during my consulting days which ended last year as I became a corporate whore and I've run into it twice I'd say that makes it decidedly not rare...unless of course I'm just an anomaly who has run into more than my fair share of patent lunacy.

    11. Re:This is real science. by Luckyo · · Score: 4, Insightful

      Real patent problems almost never to never make news. They are about people dropping research outright, without ever getting to the point of infringing patents, because of simple FEAR or infringement, or because when they start, the lawyer tells them to drop it because of the aforementioned risk. Number of such cases dwarfs the cases that actually progress to level of getting actual patent problems.

      Yes, it is this bad. What you see on slashdot doesn't count as a tip of an iceberg - it's more of a few ice crystals from the tip of the iceberg at best.

    12. Re:This is real science. by Nemyst · · Score: 3, Insightful

      Current business is "make money within 6 months or GTFO".

      Yeah, I'm exaggerating, but not by a whole lot. Even in the best of cases, things like extrasolar planet discoveries, the LHC or other "fundamental" science don't have applications within 10 if not 20 or 50 years, maybe more. They're of no use to business even though business will thrive on it in the future.

    13. Re:This is real science. by khallow · · Score: 2, Insightful

      Maybe that's because various scientists and researchers don't want to deal with the headache and pain that comes along with some misinformed boob misinterpreting valid data and ranting about how it's proof the the researcher/scientist is a fraud and criminal. The whole climate change debate thing comes to mind. When climate researchers' data did get out in the open, various news sources jumped all over the researchers like a pack of ravenous wolves. Hell, there was literally an army of bloggers who were actively seeking any nit they could find to discredit the research.

      Can you point to a case where this was a serious problem as opposed to benefit? The case of climate change is not a good example because it is a high stakes game. You would expect, with the sort of claims that are made there, greater scrutiny of those claims, the people who made them, and the processes by which they arrived at those conclusions. That scrutiny includes a bunch of boobs with blogs. If the scientists (who I might add seem in large part publicly funded) can't weather that, then maybe we should get a crop who can.

      Also, hiding data is a symptom of "fraud and criminal acts". When someone is hiding data, I can't distinguish between the cases of "fear of illegitimate persecution" and "fear of legitimate persecution".

  2. Uh, wow by Rijnzael · · Score: 4, Insightful

    It's great to see that they suspended profit and property motive for the pursuit of something that can improve the lives of humanity as a whole. It's a nice change, even if temporary, against the backdrop of patented genes, seeds, and the like in our day and age.

    *At least that's what it sounds like, I don't have an NYTimes login and don't have interest in one, so I didn't RTFA.

  3. This is great news, and a great step forward. by Red_Chaos1 · · Score: 5, Insightful

    Now all we need is for this to become the norm.

    Quite frankly I don't understand how it has been allowed for things like genes and sequences and such to be patented, and I think the notion that such things can be patented is ridiculous. But who am I, other some peon somewhere, right?

  4. It's not just Science... by Gaian-Orlanthii · · Score: 2, Insightful

    ...it's a Sudden Outbreak Of Common Sense. How come no-one else tagged it thus?

  5. This is what I was always taught science was like. by meerling · · Score: 2, Insightful

    Sharing of data and ideas to further the cause of science and humanity.

    Then greed took over and corrupted it completely.

    It's nice to see a gleam of the dreams of progress can still exist somewhere.

  6. Re:This is what I was always taught science was li by Anonymous Coward · · Score: 1, Insightful

    In a perfect world, full of unicorns and magic fairy dust, scientists would share everything and work together. But in the world we live in, each tries to be more successful than the next in order to remain employed and feed his family.

  7. Global Warming by SnarfQuest · · Score: 1, Insightful

    It would be interesting if the Global Warming priests would do something like this. Think of the knowledge that could be gained if they weren't so insistent about hiding everything, and making sure nobody can double check their results.

    --
    Who would win this election: Andrew Weiner vs Andrew Weiner's weiner.