Mind to Market

Friday, August 20, 2010

Open Data in Alzheimer’s Research

I've long been a fan of open access to scientific documentation; providing free online access for scientific work, especially that funded by public sources. A recent research project on Alzheimer's has taken this a step further by providing access to experimental data as it is produced. This is a major paradigm shift in scientific research, one which could provide both real benefits to the research and upset the traditional scientific culture.

Benefits include increasing the pool of researchers analyzing the data, i.e. more eyes and minds that may lead to more discoveries. The data set has been downloaded over 3200 times, which is some indication of distribution.

But this is a major departure from how research has been done and it conflicts with some of the foundations of scientific research. Scientists are rewarded for what is considered to be their discoveries, inventions, ideas. They are incentivized to keep this information private until they themselves have analyzed it and have made what discoveries they could. It makes clear sense that if you are the one who wrote the grants, received the funding, ran the experiments you should be the one to get the credit and ensure future funding.

Even more remarkable is the fact that the Alzheimer's Disease Neuroimaging Initiative, ADNI, is a public-private collaboration including some 20 pharmaceutical companies. The drug companies can still profit off of drugs they may eventually produce, but the data will remain in the public domain.

There have been a number of important papers that have been published recently and some very significant results on early diagnosis of Alzheimer's, a fact that may be attributed to this new paradigm. More than 100 studies are now underway on drugs that may stop or slow the disease.

Other large research studies have taken notice and are using the Alzheimer's project as a model for collaborative research. This may not be a model for all future research, but it does provide a glimpse at how collaboration could advance research in certain areas.

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