A new online platform is launching today which will allow participants to give scientists access to their medical data, including information on genomes, bacteria and other health-related matter.
The Open Humans Network aims to pool the shared biological information to help researchers seek out new discoveries. The individuals would not volunteer for a single study alone, but rather make their data accessible to any legitimate scientist across a range of research projects, despite the obvious threats to privacy.
“It’s like open-sourcing your body,” said project director Jason Bobe.
The launch of the Open Humans platform comes at a time when researchers are increasingly worried about the amount of valuable genetic data and other biological information which is being kept in the dark. According to Harvard geneticist George Church, researchers at universities are concerned that competitors could access their data and beat them to unveil new discoveries, while commercial groups are keen to keep their information under wraps for their own profit.
“Data hoarders range from two-person labs to large companies,” said Church.
The Open Humans project aims to reverse this tendency to steal away data. Currently there are three research projects that people can sign up for at www.openhumans.org: a stomach bacteria study conducted by American Gut, a GoViral investigation into flu season across a number of U.S. regions, as well as The Personal Genome Project, led by Church, which is collecting complete genome sequences to analyse the links between DNA variants and health.
In joining one of these projects, the subjects agrees to share their information across related studies. An individual’s name is attached to the data so that any of the scientists can contact them directly.
“You become a richer resource if your data are shared among as many scientists as possible […] 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” said Bobe.
Before participating across the Network, participants must pass a test to ensure that they are aware of the potential risks associated with sharing such detailed genetic information, such as hacking, increased life insurance premiums, and discrimination in long-term care services.
The Open Humans Network is supported by $500,000 (approx. £335,000) in funding from the John S. and James L. Knight Foundation, as well as the Robert Wood Johnson Foundation.