Researchers from Harvard, NYU and the University of California San Diego have come together to set up the “Open Humans Network,” in an effort to let individuals share their personal health data to accelerate medical breakthroughs.
Funding for the initiative comes from John S. and James L. Knight Foundation and the Robert Wood Johnson Foundation, in the form of $500,000 from each in separate grants.
The project’s director, Jason Bobe who also runs the project’s parent organization, PersonalGenomes.org, explains, “Think of it as open-sourcing your body.”
“There is tremendous potential for accelerating medical discoveries by helping individuals take their health and personal data out of data silos and making the data more broadly used.”
The project will allow “willing individuals” ease in access and sharing of data with researchers through an online portal that matches volunteers having specific health data with researchers who would benefit from access to more information.
“The premise is that more individuals will join scientific studies if they are empowered with the choice to share their data. And the greater availability of shared data will allow scientists to conduct more studies, and produce more robust and meaningful results,” explains the blog post making the announcement.
A data sharing framework allows researchers to join and share respective studies at openhumans.org, wherein individuals participate in studies that are part of the framework by importing their data into a profile on the Open Humans Network website.
Presently the portal has three studies that members can take part in:
- “American Gut” – exploring microbial diversity of the human body;
- “GoViral” – profiling viruses related to flu-like illness; and
- “Harvard Personal Genome Project” – collecting genomic, environmental and human trait data.
As for the privacy aspect of the project, members must pass a test as part of the consent process to ensure that they understand the potential risks of sharing personal health data, publicly.
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