‘Open-source your body’: Top researchers launch online platform to share health data
The platform was launched Tuesday by top university researchers from Harvard, New York University and the University of California San Diego. It allows its participants to help match people willing to share their health data with researchers who would benefit from access to more information. The data can be used by different researchers and not only one, as usually happens in volunteer research.
“Think of it as open-sourcing your body,” Jason Bobe, the project’s director, wrote on the project’s web page. “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 founders say the academic researchers and private companies nowadays often keep the results of their work in secret trying to defend them from competitors and to get profit, but their project allows any participating researcher “to log in and look through the genomic and other data" of Open Humans volunteers.”
At the moment a volunteer can join three researches. American Gut investigates microbial diversity of the human body. GoViral studies various viruses circulating in different areas of the US during flu season. The third, called the Personal Genome Project, led by geneticist George Church of Harvard University, is collecting genomic, environmental and human trait data.
“Open Humans aims to break down data silos in human health and research,” the founders of the project said on the website. ”We believe data has a huge potential to live and grow beyond the boundaries of a single study or program. Our online portal allows members to aggregate data from the research they participate in. By connecting individuals willing to share existing research data about themselves with researchers who are interested in using that data, data can be reused and built upon.”
The participants of the project have to pass a test to prove they understand the potential risks of sharing their medical profile and health history, as it can be hacked and used against them, for instance in discrimination in life insurance. But the authors of the project say many people have joined in, regardless of the dangers.
“Despite the risks, we find many people genuinely want to ‘open source’ themselves to contribute to the greater good,” Madeleine Ball, the project’s lead investigator, wrote on the project website.
The project is backed by the John S. and James L. Knight Foundation and the Robert Wood Johnson Foundation, each of which invested $500,000 in separate grants. The idea first emerged in 2013 but the project was launched this year.