More than three years after Clark first put her genes up on the web for all to see, roughly 1,500 others have joined her on openSNP. It isn’t the only social network out there for genetic exhibitionists. Just like someone might have profiles on Facebook, Twitter, and LinkedIn, people are starting to upload their genetic information to multiple sites. Clark is active on Genomera, Snpedia, and Promethease — all grass-roots open-source platforms for genetic information and research. People have even uploaded their genes to the collaboration tool Github.
This all adds up to a citizen-genetics movement that is just getting started. People like Sharon Terry, an advocate for public participation in genetics research, and Melanie Swan — a Silicon Valley entrepreneur who founded DIYGenomics, an organization that organizes crowdsourced genetics research — are spurring this revolution.
“What we’re trying to do is imagine a system where the patient says, ‘I want my data. I want it open. I want researchers to work on it. I want them to share it.’ We’re trying to build this alternate universe,” said Stephen Friend, the director of Sage Bionetworks, a nonprofit that champions open science.