Fellow Iron Blogger Madeleing Price Ball is also a research scientist with Personal Genome Project (PGP). She recently put up a post about diversity in PGP. In short, they’re looking for more.
PG is a “self-recruiting” project. That is to say, “all participants have enrolled in our project through word of mouth, finding our website and enrolling online.” In short, educated white men who are interested in understanding their genes and don’t mind sharing. There is a test required to participate in PGP. This is good, because rather than just signing a waver, you are making it clear that you understand what you’re getting yourself into. This present another barrier for entry.
PGP is cool because they make their data publicly available. It’s under a CC0 license, which is CC’s answer to public domain. This data is helping science do what it’s supposed to: help us understand the world. Seriously. Scientific research can be unreasonably cutthroat and competitive. Things like this, the sharing of data, the public ownership of it, is a reminder that with science we’re trying to understand and interact with our world in new ways. More people can do more things with this vast bank of meaningless information and turn it into knowledge we can do real things with. A thousand researchers can do a lot more than ten, and with a thousand perspectives, we have the chance to learn so much more.
I’ve not participated in PGP yet. I think about it, but I’m not sure. Committing your genome to the public is a big deal. One of the things PGP is hoping to have is families participating. If mine decides to throw their genes into the ring, I’d happily swab my mouth and hand the saliva over.
*Ball, M.P. “Seeking Diversity.” Personal Genome Project Blog. November, 29, 2012.