Citizen Scientists Take On the Health Establishment - WSJ.com
Connotea Imports 2012-07-31
"[Sharon Terry] is now helping to run another effort, launched earlier this year, that is even more far-reaching. Called "That's My Data!'' it aims to facilitate the flow of patients' detailed genetic data to researchers in exchange for open access to the results for those who contributed samples....Stephen Friend, who runs "That's My Data!" with Ms. Terry, came up with the project's name earlier this year because, he says, "it reflects the absurdity of the current situation." ...A pediatric oncologist by training, Dr. Friend co-founded Sage Bionetworks in Seattle after many years in the pharmaceutical industry. His mission was to build a neutral place where data could be collected and anyone could leverage it to make discoveries—including patients. Earlier this year, Dr. Friend convened a meeting in Toronto with 60 academics, scientists and patients to discuss ways to work together. One participant was John Wilbanks, who earned a degree in philosophy from Tulane and went on to run Science Commons, which focuses on getting scientists to collaborate by signing agreements to exchange research data....Mr. Wilbanks, who recently left Science Commons, created a standard consent document that will allow people to agree to let their genetic data be studied by anyone who is interested—as long as the investigator shares the results...."