[Lisa Neidert]

There was a small open data workshop last year – mostly attended by medical
folks who were all for sharing data:
http://science.creativecommons.org/sharingvprivacy/workshop.html
John Wilbanks who was quoted in the article was one of the attendees.
The folks in bold were the leaders for the various discussion threads we
had, so they are also good leads for speakers at conferences.
Wilbanks is involved in ways of increasing the pool of subjects – has a
portable consent form and is using the Apple Research Kit:
http://www.psc.isr.umich.edu/pscinfoserv/?p=4360
-Lisa Neidert

Discussion

[Puneet Kishor]

John is always be a dependable choice for a speaker, but Stephen Friend (co-founder of Sage Bionetworks where John works) already keynoted RDA in San Diego.
An even better option would be a researcher or a patient in the thick of all of this. As Lisa mentioned, many of the folks listed on the “Sharing v Privacy” workshop website would be a good choice as that workshop was exactly about the tension between sharing and privacy. I would recommend Sharon Terry. Here is a recent article by Sharon that wonderfully lays out a problem with the status quo.
Disclosure: I dreamed up the “Sharing v Privacy” workshop, and organized it in collaboration with UCSF, the Personal Genome Project and the U of Zürich, with generous support from the Robert Wood Johnson Foundation.

[Author]

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