On Genetic Data

In case you’ve run out of things to worry about, Kayte Spector-Bagdady gives us another in a recent post entitled “Why you should worry about the privatization of genetic data.”

Spector-Bagdady compares President Obama’s Precision Medicine Initiative with the work of the direct-to-consumer testing company, 23andMe.  Her concern is that “private companies don’t necessarily have to follow the same regulations regarding access to their data that federally funded researchers do.  And a recent proposal to change consent regulations for human research may make it cheaper for private companies to collect and use this data than public ones.”

A major concern is the possible creation of private monopolies of genetic data, making the data collected by 23andMe and others a ‘business asset’ that can be sold privately and cannot be readily accessed by public researchers. (According to Spector-Bagdady, Genetec offered to pay up to $60 million for data.)  She concludes, “our medical information is more than a business asset for private leverage. We need to make sure that public genetics researchers are private industry’s partners, not dependents, and that we enable public banks so private ones do not become monopolies.”

Though 23andMe provides the public with some clever advertising and the hope of having a handle on possible future medical risks, consumers would be wise to be aware of what happens to their data.  This, of course, raises another important question–to whom does our data belong?

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