Open Humans Network

PersonalGenomes.org

Date Awarded
01/14/14
Amount
$500,000
Grant Period
01/14/14 to 08/13/15
Focus Area
Media Innovation
Initiative
Knight News Challenge

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Grantee Contact

  • Boston, MA

Featured Media

To design and launch Open Humans Network, an online system that helps match people willing to share their health data with researchers who would benefit from access to more information, all with a focus on exploring new standards for open health data.

While people now have greater access to their own medical records, sharing personal information about their health is difficult—limiting the use of this data to advance medical research. To break down silos, the Open Humans Network will create an online portal to connect people willing to publically share data about themselves with researchers. The portal will include three components: a personal page that will allow participants to set up their data profile; a public data explorer enabling people to explore and use data compiled from participant profiles; and a set of design guidelines for researchers looking to use a collaborative data sharing model.

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Project Team

Jason Bobe

Executive Director

Jason Bobe is currently the founding Executive Director of the nonprofit PersonalGenomes.org and has served as the Director of Community for the Harvard Personal Genome Project since 2007. Jason is also curator and executive producer of the annual Genomes, Environments and Traits Conference (www.getconference.org). Earlier in his career, Jason helped establish one of the first direct-to- consumer (DTC) genetic testing and interpretation companies. He is regarded widely as a thought leader in citizen science, personal genomics, DIYbio and equitable access to biotechnology. He was an invited speaker to the Presidential Commission for the Study of Bioethical Issues and has contributed to many news stories, radio, TV and books.

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