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Rare Sharing of Data Led To Results In Alzheimer's Research
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.'"
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."
My new definition of irony:
A story on great leaps in progress being made because of openness being closed off behind a paywall.
Hey mate, spare a sig?
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.
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?
"Scientists attempt to actually better society, are surprised to find that it works"
"Method of patent free knowledge sharing between scientists."
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.
Something I wrote on that begins: http://www.pdfernhout.net/open-letter-to-grantmakers-and-donors-on-copyright-policy.html
"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
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
http://www.diseaseproof.com/archives/cat-alzheimers-disease.html
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.
A 21st century issue: the irony of technologies of abundance in the hands of those still thinking in terms of scarcity.