Portable Legal Consent for Common Genomic Research

Date: 

Fri Mar 16, 2012

Host: 

John Wilbanks
Erwing Marion Kauffman Foundation

Category: 

Patient Centered Research

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ABSTRACT

This webinar will cover the Portable Legal Consent for Common Genomic Research (PLC-CGR), an attempt to radically change the way that we attempt to connect our genotypes to health outcomes. PLC-CGR is an open-ended clinical in which citizens enroll in a one-time standardized consent process, then upload data they have gathered about themselves and their health for use and reuse in computational research. Participants can upload genotypes, health records, and data gathered from mobile devices or surveys, either directly or via automated means, and users of the data face only the transaction costs of one-time registration and acceptance of conditions not to re-identify or harm.

 

SPEAKER BIOGRAPHY

John Wilbanks is a Senior Fellow in Entrepreneurship with the Ewing Marion Kauffman Foundation. He works on open content, open data, and open innovation systems. He also serves as a Research Fellow at Lybba. He's worked at Harvard La School, MIT's Computer Science and Artificial Intelligence Laboratory, the World Wide Web Consortium, the US House of Representatives, and Creative Commons, as well as starting a bioinformatics company. He sits on the Board of Directors for Sage Bionetworks, iCommons, and 1DegreeBio, and the Advisory board for Boundless Learning. Dr. Wilbanks holds a degree in Philosophy from Tulane University and also studied modern letters at the University of Paris (La Sorbonne).

 

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