Partnering for Cures 2011 - Presentation - Sage Bionetworks, Standardized Informed Consent Protocol





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Published on Nov 8, 2011

Sage Bionetworks has developed and is releasing, at Partnering for Cures, the testable alpha of a standardized informed consent protocol and corresponding open technical implementation for creating, storing, and sharing public genomics data for research purposes. It can be thought of as an application programming interface for a very specific kind of consent to sharing genomes in a standardized way, one that can allow a multiplicity of applications that leverage that consent. Patients could give consent via smartphone apps or the Web, and hundreds of different studies could access a single set of consent forms, all legally interoperable.

John Wilbanks, Senior Fellow, Kauffman Foundation
Stephen Friend, President, Sage Bionetworks

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