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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 Raelus (859126) on Friday August 13, 2010 @03:58PM (#33245754)

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

    • by Anonymous Coward on Friday August 13, 2010 @04:08PM (#33245884)

      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.

      • Re: (Score:3, Interesting)

        by Khyber (864651)

        "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?

        • Good thing the Wall Street types are not fans of scifi.
        • by Nemyst (1383049) on Friday August 13, 2010 @08:40PM (#33248050) Homepage
          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.
        • by Urkki (668283)

          "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?

          Any patent on that kind of thing would expire long before there's even a chance of actual profitable company to be sued.

          And still, I'm actually pretty sure there is quite a dung-heap of that kind of patents anyway...

        • by sznupi (719324)

          Why do you assume at all that "figuring out how the universe works" involves teleportation and FTL / time travel? (that said, sure, there is money in those things...already; via scifi works)

      • Re: (Score:2, Interesting)

        by Anonymous Coward

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

        • by sznupi (719324)

          Yeah, makes one wonder, considering how many of the most powerful economic entities (of various kinds) have huge financial interest in disregarding AGW...

    • by immakiku (777365) on Friday August 13, 2010 @04:08PM (#33245886)

      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

      • by Moridineas (213502) on Friday August 13, 2010 @04:13PM (#33245934) Journal

        Back in the day Science and math was shared freely

        Back in what day?

        • by bunratty (545641) on Friday August 13, 2010 @04:21PM (#33246042)
          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.
          • Please, rivalry and secrecy have been the way of things since the dawn of human history, ffs...

          • by dan828 (753380) on Friday August 13, 2010 @04:45PM (#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 immakiku (777365) on Friday August 13, 2010 @04:47PM (#33246348)
            In those cases the reasons are all personal, whereas now the hiding and protecting of research seems codified into our society.
            • by bunratty (545641)
              Oh, you mean like making ideas public by publication in journals and filing patents so innovative ideas are made public. Wait, what?
              • Re: (Score:3, Insightful)

                by immakiku (777365)
                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.
            • whereas now the hiding and protecting of research seems codified into our society.

              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 ac

              • Re: (Score:3, Interesting)

                by Lemmy Caution (8378)

                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 pr

              • Re: (Score:3, Insightful)

                by khallow (566160)

                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

                • by sznupi (719324)

                  Scientists willing to tackle AGW (especially in one particular way...) can also go for funding to fossil fuel energy companies BTW; entities very interested in the results of such research, and one of the biggest and most powerful around. Or to some transnational organisations with deep pockets, controlling said industry...

                  How the above is not exactly happening (certainly as far as any results go), on the contrary - energy companies are more and more accepting of AGW, is one of the better things showing val

                  • by khallow (566160)

                    How the above is not exactly happening (certainly as far as any results go), on the contrary - energy companies are more and more accepting of AGW, is one of the better things showing validity of the idea.

                    So who is persecuting these hapless scientists and why, if it's not the rich energy companies?

                    Also, remember tobacco industry?

                    Yes. I don't seem to recall that there was persecution of scientists who presented evidence that smoking was harmful to your health. Instead the approach was to present counterstudies that purported to show the opposite and to conceal evidence that supported the claim that smoking was harmful. Which by some amazing coincidence, the people who were concealing evidence didn't fall into the category of scientists conc

            • by sznupi (719324)

              How are societies not (also) a reflection of individuals forming them?

      • by Atrox666 (957601) on Friday August 13, 2010 @04:23PM (#33246076)

        Since public sharing of information saves lives, not sharing is tanamount to murder or at least negligent homicide.

        Intellectual Property kills.

        • by clarkn0va (807617)
          Sadly, your comment is much more insightful than funny.
        • by pooh666 (624584)
          Why the hell is this modded funny? Anyone with Parkinson's here?
        • by dpilot (134227)

          Can you prove it, beyond a shadow of a doubt?!?
          Can you show me the smoking gun, how witholding of a specific piece of information caused a specific death?!?

          I didn't think so. Therefore your entire argument is worthless, which of course means that the ONLY True Path to scientific knowledge and prosperity for all remains Free Market Capitalism and strong enforcement of Intellectual Property Law.

          ** Insert sarcasm emoticon here. The problem is not so much that some people might think this an annoying serious

          • by rtb61 (674572)

            You really are a dolt, Proof is mind boggling easy. Just compile statistics from around the globe of all the people that dies because they couldn't afford a profit inflated patented drug, literally millions of people, year in and year out. Look at all those threats of trade sanction when countries told the patent freaks to ESAD and produced patent infringing generics that saved millions of dollars and millions of lives. Do patents kill, absolutely.

            The best by far most cost effective research is done by g

            • by dpilot (134227)

              You missed my point, and apparently my sarcasm remark.

              For some "skeptics", most notably I believe those who are making their mints based on the status quo, there is no such thing as sufficient proof. There is no line direct enough for them to admit that their current business model has flaws. To drop back to my example, about the only way they would admit that such a medical patent might be a problem is if the patent holder shoved it in someone's mouth, choked and killed them. And even then only in front

              • by rtb61 (674572)
                A hint with sarcasm, it must exceed the extreme of the group it represents. In the case of right wing beliefs, you comment was not sarcastic at all but message spot on, something they acknowledge as coming from one of their own. You have to dig a little deeper, push well beyond what your would accept as the norm.

                When you attempt to reach out to express the extremes of human mores, the words and style of expression must not just touch on but exceed norm and, when they norm is they farm right, the derision

      • 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

        My impression is that in research, being selfish with data and patenting things is the exception, not the norm. In much of the hot research you read about on front-page NY times, like curing cancer, sure, there's a lot of money to be made there so people are going to be greedy. But most research isn't so profitable. Pretty much all basic biology, there's little to be patented there.

        For example it seems to me that if someone isn't sharing their data in my field (cell biology) it's because they don't fully

        • My impression is that in research, being selfish with data and patenting things is the exception, not the norm...

          It depends on the field, and the person. Medical science is the worst of the lot. Not only are a lot of the studies total crap, but they treat every little thing as a billion dollar a year patentable thing. Seriously we have been waiting for months for some data from a company but are still waiting for all the NDA to be signed. And we get paid *by the month* while we are working on the project.

          In other fields its very cooperative. But you also get some very paranoid scientist.

      • Back in the day Science and math was shared freely through notes and letters among intellectuals.

        Ceiiinosssttuv!

    • Research funded by capitalism does not "replace" any other type of research; it supplements it. More science is a good thing.

      Though I would strongly support any legislation requiring all privately-funded research to be published. It is a shame that good research goes unpublished today because its conclusions are not beneficial to its financiers.

      • by Haedrian (1676506)

        I'm sorry, you can't research in that field because I already patented the entire branch of science.

        Your method of using X to view Y goes against my patent called "The use of X in area Z". Sorry for the inconvienance have a nice day.

    • You mean a corporatist mockery of science. Capitalism was killed many many years ago.

    • by smaddox (928261)

      I'm all for openness, but there's some reason to believe that the person taking the data is the person best fit to analyze the data. However, in the medical field, this may not be true. Since all good studies in medicine will be double blind, there should be no problem with outsiders analyzing the data. Let's not get carried away and assume this would work for all scientific fields, though.

      Again, openness is good, but sometimes faulty data won't be discovered to be faulty until the scientist who took it has

    • by Dread_ed (260158)

      I had a thought once (yes I had one thought!):

      If all mankind could work together for a single goal, how long would it take to accomplish it?

      The answer is "One hell of alot faster than working the way we do now."

      Of course the idea is irrationally optimistic and frought with problems both big (organizational) and small (self interest/motivation.) However, this data sharing between interested, relevant parties is a microcosm of the idea as it allows unfetterd collaboration worldwide. The results speak for th

  • by Palestrina (715471) * on Friday August 13, 2010 @03:58PM (#33245758) Homepage

    ...but I sometimes forget where I put it.

    • by rvw (755107)

      ...but I sometimes forget where I put it.

      Just use facebook, and nothing will ever get lost, even your login.

  • by sackvillian (1476885) on Friday August 13, 2010 @04:01PM (#33245784)

    My new definition of irony:

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

  • Uh, wow (Score:5, Insightful)

    by Rijnzael (1294596) on Friday August 13, 2010 @04:01PM (#33245790)
    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.
    • Don't worry, as soon as they have a drug the patent hammer will fall, as well as a million lawsuits. The drug will be $500/pill and we'll all wonder what the hell happened. (and don't tell me pills don't sell for $500 each, I've been prescribed them before and laughed my ass off when I tried to pick them up. Telling the pharmacist to go fuck themselves probably did more good than the pill would have anyway.)
  • by Red_Chaos1 (95148) on Friday August 13, 2010 @04:07PM (#33245870)

    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?

  • by Anonymous Coward on Friday August 13, 2010 @04:11PM (#33245914)

    "Scientists attempt to actually better society, are surprised to find that it works"

    • One could read most Onion editions as a real newspaper. The only problem is that this one would get out with some faifh on humanity.

    • by VShael (62735)

      "With a name like Trojan-owski, I wouldn't have been surprised" -- Dr Badvirus

  • ...it's a Sudden Outbreak Of Common Sense. How come no-one else tagged it thus?
  • by meerling (1487879) on Friday August 13, 2010 @04:14PM (#33245962)
    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.
    • by Frans Faase (648933) on Friday August 13, 2010 @04:45PM (#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.

    • Re: (Score:3, Interesting)

      by hey! (33014)

      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 mos

  • by AltairDusk (1757788) on Friday August 13, 2010 @04:22PM (#33246052)
    "Method of patent free knowledge sharing between scientists."
  • more and more I wonder about the 2012 thing.

  • Alzheimer's disease cannot be diagnosed unless through pathology, but for those with probable cases, this is good news. I'm glad to see this sort of information sharing. Science used to move at the speed of journal publishing schedules. Hopefully this will be influential in bringing science into the 21st century.

    • by jd (1658)

      You are correct, but MRI scans showing tau protein throttling the living daylights out of brain cells can be done whilst the patient is alive and, if not well, at least breathing.

      My father's research into Alzheimer's was interesting. He was able to show that patients with kidney failure suffered a build-up of aluminium in their bodies - including their brains - and that Alzheimer-like symptoms were to be found in such patients. He was also able to show that using desfereoxamine (a treatment for iron toxicit

    • Just this week there was an announcement that with a spinal fluid test may diagnose Alzheimer's Disease with a great level of reliability. In the fall of 2006 a spinal fluid test was used to diagnose Alzheimer's Disease with my wife. Then she was still in the early stages. In the past four years she has progress to the point that she needs help with almost all daily routines. She also lost the ability to write. I have enlisted her to be accepted in a caring home, because she a too great a burden for our fam
  • by Coppit (2441) on Friday August 13, 2010 @06:39PM (#33247254) Homepage

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

  • 'It was unbelievable,' said Dr. John Q. Trojanowski

    Oh right, like I'm going to trust any "free gift" data I get from a guy with a name like that!

  • I posted on that here:
    http://listcultures.org/pipermail/p2presearch_listcultures.org/2009-October/005081.html [listcultures.org]
    And here:
    http://www.pdfernhout.net/reading-between-the-lines.html [pdfernhout.net]
    "So, were people perhaps denied Vitamin D as an example of a public institution being funded by public dollars privatizing research results? Something Princeton itself does and encourages. If people were somehow getting less Vitamin D because of the societal consequences of patents (including competitivenesses amo

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