‘Open-source your body’: Top researchers launch online platform to share health data

Reuters / Bazuki Muhammad

Reuters / Bazuki Muhammad

Online project “Open Humans” has been launched to make health-related data available for scientists to mine for discoveries and also help volunteers make that data more accessible to researchers. The data can be used to study genome, microbes and viruses.

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.

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“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

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

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.

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“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

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

“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.

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