Harvard geneticist George Church has backed Open Humans, an online platform that asks people to openly share their genomes and other personal data. The idea is to marry the underlying principles of the open-source and quantified-self movements to make more data available to more researchers.
Church has been pushing for more data sharing for years, notably through the Personal Genome Project (PGP) he initiated in 2005. PGP sits alongside American Gut and GoViral--which are researching the microbiome and respiratory infections, respectively--as one of the three founding studies on the Open Humans platform. The U.S. public can create a profile on Open Humans--using either their real name or a pseudonym--and import data to share with any study to which they are relevant.
Open Humans and its backers--the Knight Foundation and the Robert Wood Johnson Foundation chipped in $1 million--are betting a sizable pool of people see value in being so open with their most personal data. "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," Open Humans co-founder Jason Bode told Reuters.
Like PGP, which has stirred up a few controversies in its short history, Open Humans is open about the risks of sharing data. "You'll need to understand that the data may be very identifiable. This means that someone may figure out your identity, even if you don't share your name," the Open Humans website states. People must pass a test showing they understand the risks--such as the possibility an insurance company will use their data to discriminate against them--before they are allowed to take part. The site had amassed more than 400 members within days of its public launch, Forbes reports.
- read Reuters' article
- here's Forbes' coverage
- and the Open Humans blog