Dilettantes come-a funding…
The NY Times reports today that Sergey Brin, co-founder of Google, is going to fund a Parkinson’s study (N=10,000) involving his wife’s company, 23andMe. There are problems with this on several levels.
The study–basically, from what I can gather–will recruit lots of people without Parkinson’s (the control) and lots of people with Parkinson’s, and compare their genomes against each other to determine statistically-significant differences between the two. Therein lies an ethical dilemma. Let’s say 23andMe finds some very striking genetic feature (or a combination of features) that predicts Parkinson’s. Do they publish and share*, or do they, as a corporation, maximize profits by keeping their findings secret, hindering further research? Moreover, note these clauses in their consent form:
You are aware that some of the information you receive may provoke strong emotion.
(This is not so much a consent form as a can’t-sue-us waiver. Finding out that you’re probably going to get Parkinson’s because of 23andMe’s new discovery using your DNA is going to hurt–too bad there’s just too many people in the study to care.)
Also:
You understand that your genetic and other contributed personal information will be stored in 23andMe research databases, and authorized personnel of 23andMe will conduct research using said databases.
You acknowledge that 23andMe may enter into partnerships with other non-profit or commercial organizations to conduct scientific research on data collected by 23andMe. You give permission to 23andMe, its assigns, and its non-profit and commercial partners conducting scientific research to publish results of research as described herein.
What 23andMe is saying here is that they can mine your DNA and use it to make a profit in the future or, more likely, add it to a database of genetic information that they can let outside parties use for a fee.
Oh, did I mention you have to pay to enter the study? (O.K., it’s subsidized and relatively cheap. But you still have to pay…)
This is, really, the worst kind of science. It’s not uncovering the truth; it’s uncovering profit potential.
Yet, ultimately, we have little choice. Without 23andMe, we probably wouldn’t get this kind of data for several years (perhaps decades!). And that’s because grant money is in short supply–I mean, someone’s got to bail out A.I.G.
*23andMe explicitly details their intention to publish results; however, they are murky on what they will publish. It’s plausible, for instance, to publish basic findings in a scientific journal to satisfy critics while holding back meaningful data so profit can be squeezed from it.