Friday, August 13, 2010

It's Good To Share, and to Play With Others

This is a very important article, on a very important issue. If you aren't in the business, you might not be aware of it:

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.”

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.”

http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?hp

Many companies researching biomarkers restrict others' ability to do research on them, guarding their intellectual property, afraid of negative results in others' studies. A big problem, that. Proprietary tests for breast cancer risk come to mind. A lay person's idea of how science is conducted would, usually, lead to the assumption that data sharing and openness are the rule. Not so. Good on the actors here for sharing, and, in doing so, demonstrating that progress is faster, and intellectual property rights generally safeguarded. Those fantasizing about 'free market' solutions in health care should jump all over this story and applaud. They will not, because it legitimizes a role for government, too. Purity above reality.

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