23andMe: give us information to "help future generations"

Esther Dyson, a director at 23andMe, has a new post on 23andMe's blog The Spittoon. Dyson acknowledges how little we currently know about the functional effects of most variable sites in our genome, and explains how 23andMe plans to address that issue:

To learn more, researchers need to collect thousands of genetic profiles – and the health data connected with each of them – to find correlations between the two. That leads to a second goal of 23andMe – to collect a large database of genetic information and then come back to you over time with invitations to provide specific health data and participate in research.

As David Hamilton has previously pointed out, the underlying business model of most of the current personal genomics companies is almost certainly not reliant on the money that customers pay for their genome scans (the profit margin on each scan is likely quite small, although I guess it helps to pay the bills). Instead, the plan is to aggregate genetic and trait data from customers and use it to find new genetic associations. These new associations can be fed back to customers, but they can also be used to create a data-set that might be of value to biotech and pharmaceutical companies. That's almost certainly where the personal genomics companies are hoping the real money is.

This plan has the potential to be a win for both customers and companies, as Dyson explains:

We’re not asking you to do this for purely altruistic reasons - either on our part or on yours. We’re a profit-seeking company, even though our founders and employees – and directors! – all share the vision of better understanding of everyone’s genomic make-up. As for you, the research results your data help produce could translate directly into benefits for you, or at least for your children, grandchildren and friends.

I've previously expressed my doubts about how useful the information generated by 23andMe will be, at least if they rely purely on self-reported trait data from online surveys (of course, they have other options). But perhaps I'm underestimating the power of incentives: customers want accurate new associations to be added to the 23andMe database to increase the value of their $1000 purchase, which might be enough to make them pay extra care to the information they put in themselves.

Of course, the ultimate would be a collaboration between 23andMe and Google's medical record storage service - access (with consent, of course) to both DNA samples and detailed health records from thousands of people would be a phenomenal engine for commercial success, and hopefully also a bonus to the research subjects. However, I suspect that the outraged screams from privacy advocates would be audible from space.