Fusion has the details on the growing community of DNA uploaders:
Members of openSNP upload their genes along with things like their sex, age, eye color, location, Fitbit data and medical history — for anyone to see and analyze. The record lives on forever, in an open-source database, so the detailed warning on its sign-up page should be read very closely. But for [University of Toronto bioinformatics student Samantha] Clark, the possibilities outweigh the risks: She wants scientists to have access to genetic information of every human being in the world.
“The more people, the easier it will be for citizen scientists to work with the data and make new discoveries. If I want other people to do this and help science, I should set the tone,” said Clark, 25. “The benefit will be infinite as it picks up pace.”
Clark had gotten her DNA analyzed by personal genomics company 23andMe. While a user can download her genetic profile from the Mountain View-based start-up, only 23andMe and its partners have full access to the company’s genetic treasure trove. Clark was uploading her 23andMe profile to openSNP so anyone could use it.
openSNP, an open-sourced web-based social network and bank for DNA information, is the brainchild of Bastian Greshake, a bioinformatics doctoral student at Goethe University in Frankfurt, Germany and a self-proclaimed open-source geek. Greshake was the first person to upload his data to the platform. Clark was the second.
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.