An online platform launched last Tuesday, will let people eager to share personal information beyond what’s on their Facebook profile have another avenue, they could give scientists information about their genomes, gut bacteria and other biological data.
“Open Humans Network” targets to make health-related data easily obtainable for scientists for discoveries and help volunteers make that data more accessible to more researchers. Participants would allow any legitimate researcher use their data, even though that poses potential threats to privacy, rather than volunteering for a single study.
Project director Jason Bobe says, “It’s like open-sourcing your body.”
Launched when scientists are more concerned that valuable genetic data are being concealed, academic researchers do not want to give competitors access for fear of being scooped on new discoveries, and gene-testing companies are keeping 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 pursues to counter that.
At www.openhumans.org, people can sign up to one or more of the three current studies.
American Gut is investigating links between gut bacteria and disease. GoViral identifies type of viruses circulating in different areas of the United States during flu season. Harvard’s Church leaders of The Personal Genome Project, has already collected full genome sequences on about 500 of its 4,100 volunteers, in a struggle to study links between DNA variants and health.
People approve 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, by joining the study.
“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 needs to pass a test signifying they comprehend the probable risks of sharing their genetic profile and health history, including that it might be hacked, something that could render them to discrimination in life insurance or long-term health care coverage.