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.'"

Comments

Warning, the storey is closed off!

[sackvillian]

My new definition of irony:

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

Re:This is real science.

[Moridineas]

Back in the day Science and math was shared freely

Back in what day?

Re:This is what I was always taught science was li

[Frans Faase]

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.