Data sharing in Alzheimer research

A NYTimes article last month (thanks for sending me the link Victoria) talked about a data sharing project on research into biological markers for Alzheimer’s disease progression.  “Rare Sharing of Data Leads to Progress on Alzheimer’s

The project committed to making all data and all findings public immediately – available online to anyone, anywhere.  The item said:

“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.”

Some of the challenges this caused came from with the discomfort the scientists felt at working in this way.  Quoting Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania the article said:

“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.”

For all the reasons we are already familiar with there was concern:

“At first, the collaboration struck many scientists as worrisome — they would be giving up ownership of data, and anyone could use it, publish papers, maybe even misinterpret it and publish information that was wrong… But Alzheimer’s researchers and drug companies realized they had little choice.”

I would be interested to know the process adapted to work through these understandable concerns.  The article hints that perhaps the community came to a point where they realized they had to bite the bullet in order to progress… sounds like a good motivator but there must be more to the story than that.  Additionally many of the comments that accompany this article struck me that we have a long way to go to understand ways to fit data sharing and open access into public research.  Simplistic calls for abolition of intellectual property miss the mark somewhat!

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