Open Humans project allows healthy adults to open-source medical data

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Medical researchers typically don’t share the results of their studies with the hundreds of subjects who participated. But Jason Bobe, one of the co-founders of the Open Humans project, wants to reverse that trend.

The latest in a series of programs that let you to share or “open source” your genetic and health data, Open Humans, which launched Tuesday, is striving to broaden the reach and eventual impact of medical research by making it easy to participate.

The project’s launch partners are three research studies that have an established record crowd-sourcing health data for research studies.

The oldest of these initiatives is the Personal Genome Project, established at geneticist George Church’s Harvard lab a decade ago; it invites people to sequence their complete genome and donate that sample to science.

A second partner is the GoViral project, started by researchers at Harvard University and New York University, which is surveying flu-like epidemics by having sick people send in swabs and mucus samples (in a properly prepared kit), that they can then analyze for viruses or bacteria.

Third on the list is the American Gut project, based at the University of California-San Diego and the University of Chicago, which is studying the vast microbial flora that inhabit the human digestive system from crowd-sourced (and properly sealed) samples of feces or skin swabs.

Here’s how it works: Once enrolled, you can see the results of those studies as they are released. In the coming months, you can pool that data with information collected through health and fitness trackers.

Open Humans is the latest in a series of similar initiatives. Announced earlier this month, Apple’s ResearchKit allows anyone with a smartphone to participate in clinical trials.

The power of these programs is their sheer sample size — hundreds of participants sharing their health information with researches improves the speed and scope of research.

What makes Open Humans different is that it gives people a place where they can view the information that is being collected. What they choose to do with that data afterwards is up to them — they can choose to keep it private, share it with select studies, or publish it publicly. But any researcher who accesses data is required to share his or her findings with the people who supplied it.

“As we go about getting news and information about what’s going on within our own bodies, being able to unleash that data in new ways is what we’re excited to learn about,” said John Bracken, a vice president at the Knight Foundation, which awarded $500,000 to the project as one of the winners of its 2013 health challenge. The Robert Wood Johnson Foundation contributed an equal amount.

“A lot of people, when they hear about medical research, they think immediately about experimental cancer therapies. But we still have rudimentary knowledge about normal human variation,” said co-founder Bobe, who has described the project as “open-sourcing your body.”

An upcoming study from New York University and Harvard researchers will soon allow RunKeeper users to share their data via Open Humans.

Photo via Flickr user Miki Yoshihito

Nidhi Subbaraman writes about science and research. Email her at nidhi.subbaraman@globe.com.
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