The Research Commons and Clinical Research
On November 9, 2012, the Clinical and Translational Science Insitute (CTSI) and the UCSF Office of Ethics and Compliance co-sponsored a special presentation at UCSF by John Wilbanks, Chief Commons Officer at Sage Bionetworks and a Senior Fellow in Entrepreneurship at the Ewing Marion Kauffman Foundation. John is also currently serving as Special Advisor, Research Commons, at CTSI:
Many of the biggest impacts of technology have been driven by monopolies and their network effects. And when we choose open standards as our monopolies, we get vast open networks – HTML, TCP/IP, and other systems where anyone can compete. When we choose walled gardens as our monopolies, we get a very different result – Apple, Facebook, and Twitter control precisely how and when competition, and entrepreneurship can happen. We’re faced with this choice right now in biomedical research, and the decisions we make will define how the avalanche of data we can capture turns into knowledge we can use to improve health and accelerate discovery.
More about John Wilbanks:
John currently runs the Consent to Research project (CtR), a patient-contributed clinical research study in which people take the data they can gather about their own health and donate it for computational analysis. He has worked at Harvard’s Berkman Center for Internet & Society, the World Wide Web Consortium, the US House of Representatives, and Creative Commons. He is a past affiliate of MIT’s Project on Mathematics and Computation and also started a bioinformatics company called Incellico, which is now part of Selventa.
John also sits on the Board of Directors for iCommons, the Advisory Boards for Boundless Learning, Genomic Arts, Curious, and Genomera, and is a Research Fellow with Lybba.org. He holds a degree in Philosophy from Tulane and studied modern letters at the Sorbonne.
John Wilbanks in the Economist, Consent 2.0.
Recommended reading on consent issues.
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