With my Sage Bionetworks hat on, I am working on an “portable” approach to informed consent and testing it in a series of clinical research studies in which people take the data they can gather about their own health and donate it for computational analysis. With my NCO hat, I work on issues related to federal priorities in big data and health IT. For Kauffman I’m working on organizational structures for health collaboration, and at FasterCures I am writing a series on open science. I also like to agitate for public access to science through projects like the Access2Research petition and the Panton Principles.
I’ve worked at Harvard’s Berkman Center for Internet & Society, the World Wide Web Consortium, the US House of Representatives, Creative Commons (hosted at MIT’s Project on Mathematics and Computation), and the Ewing Marion Kauffman Foundation. I also started a bioinformatics company called Incellico, which is now part of Selventa.
I studied philosophy at Tulane University.
DISCLOSURES AND AFFILIATIONS
I serve on the board of directors for ImpactStory and the Foundation for Earth Science (non profit) and advisory boards (for profit, which means I am compensated in some form) for Boundless Learning, Genomic Arts, Curious, Genomera, Qualcomm Life, Patients Like Me, and GenoSpace. I am also an advisor on the commons to the University of California at San Francisco’s Clinical Translational Science Institute and will always be a member of the Lybba family.
I occasionally get honoraria and travel for speaking and writing engagements. I have consulted in the past for companies, non profit organizations, and universities in areas related to open access, open data, biotechnology, semantic web, and pharmaceuticals.