People
eager to share personal information beyond what’s on their Facebook
profile have another outlet: an online platform launching on Tuesday
will let them give scientists information about their genomes, gut
bacteria and other biological data.
The
“Open Humans Network” aims to make more health-related data available
for scientists to mine for discoveries and also help volunteers make
that data more accessible to more researchers. Rather than volunteering
for only a single study, participants would let any legitimate
researcher use their data, even though that poses potential threats to
privacy.
“It’s like open-sourcing your body,” said project director Jason Bobe.
Open
Humans is launching when scientists are increasingly concerned that
valuable genetic and other data are being kept under wraps. Academic
researchers do not want to give competitors access for fear they will be
scooped on new discoveries, and gene-testing companies keep data
private so they can profit from it, said geneticist George Church of
Harvard University.
“Data hoarders range from two-person labs to large companies,” he said. Open Humans seeks to counter that.
At www.openhumans.org, people can sign up for one or more of (so far) three ongoing studies.
American
Gut investigates links between gut bacteria and disease. GoViral
identifies what viruses are circulating in different areas of the United
States during flu season. The Personal Genome Project, led by Harvard’s
Church, has collected full genome sequences on about 500 of its 4,100
volunteers in an effort to study associations between DNA variants and
health.
By
joining a study, people agree that their data can be shared with
researchers on other projects, with their names attached so scientists
can contact them for follow-up, something not possible with
“de-identified” biological data.
“You
become a richer resource if your data are shared among as many
scientists as possible,” Bobe said. “Maybe someone will find an
association between your gut microbiome and your susceptibility to the
flu. Any participating researcher will be able to log in and look
through the genomic and other data” of Open Humans volunteers.
Participants
will have to pass a test demonstrating they understand the potential
risks of sharing their genetic profile and health history, including
that it might be hacked, something that could expose them to
discrimination in life insurance or long-term care coverage.
Open Humans is backed by $500,000 grants from the John S. and James L. Knight Foundation and the Robert Wood Johnson Foundation.
Posted by : Gizmeon
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