The Power of the People's Data—James Turner—Personal Genome Project, Open Humans Foundation
Finding Genius Podcast
Richard Jacobs
4.4 • 1K Ratings
🗓️ 23 April 2019
⏱️ 58 minutes
🧾️ Download transcript
Summary
As a participant of the Personal Genome Project (PGP), which was initiated in 2005 at Harvard Medical School, James Turner has donated a significant amount of information to the project, including an extensive personal health survey, 20 years' worth of notes pertaining to doctor visits, lab tests, treatments, etc., and MRI images. Once submitted to the PGP, a participant's information becomes available to any all researchers for the purposes of driving genetic research. The program has two main goals: to perform whole genome sequencing on as many samples as possible, and to correlate the genetic information obtained with phenotypic data.
As a descendent of the PGP, the Open Humans Foundation takes a slightly different approach to the same idea; it allows participants to choose whether they want their data to be available to everyone or only select researchers, works to facilitate the transfer of information from personal devices to biological data banks, and makes use of data inspired by the Quantified Self Movement (e.g. Fitbit/Apple Watch, diet data). Turner now serves as the treasurer and chairman of this foundation, and he joins the podcast to provide unique insight on the world of genomic data and biological research driven by the people.
Press play to hear the full conversation, and visit https://www.personalgenomes.org/us and http://openhumansfoundation.org/ to learn more.
Transcript
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| 1:15.7 | You know, if we could just, maybe just a brief, you know, you have an extensive background, |
| 1:19.2 | extensive history, but briefly what first got you interested in type 1 diabetes? |
| 1:24.0 | Well, I'm a pediatric endocrinologist and we take care of kids with hormonal disorders throughout the body, |
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