23andMe is a new personal genomics system that will have social features. Once your DNA is analyzed, you’ll be able to compare it with others’. People will be able to find each others by allele (genetic variation). Unfortunately, you have to shell out $999 for the kit and analysis, which looks at around 600,000 genetic variations. With a decent adoption rate, the company could have a robust genomic and phenotypic database, though it’s not clear from the article who would own the data and what costs and restrictions researchers might face if they wanted to dig into it. An article at Technology Review focuses quite a bit on personal use of the DNA data, and the social aspect of this particular implementation, but also on the question of h ow the data will be used. The company says it “will not sell genetic data to pharmaceutical companies, but it may sell access to the company’s pool of willing research participants or other fruits of its database.” In fact, the data will be quite valuable, and the cost of aqcquiring it will be covered by the users who pay to have their DNA analyzed – but are presumably giving up ownership of their own data.
According to the Technology Review article, the company also expects “a sort of grassroots research effort that mirrors the rising influence of patient-advocacy groups.”
If the trend attracts large enough numbers, people with particular diseases could come together to search their genomes for similarities. Or those who escaped a particular condition despite a high genetic risk could provide insight into lifestyle and other genetic factors that were protective.
We talked about just this sort of thing at a recent meeting of the e-Patients Working Group.
A cursory review of the 23andme web site didn’t reveal explicit information about how the company plans to use or monetize the data, or how the intellectual property question will be addressed. I would want to see much more about that before I would shell out $999 to pay for their analysis kit.
(Cross-posted from Weblogsky)