Privacy, data confidentiality, and community engagement in an online, genome-sequencing age

Move over, Framingham Heart Study and Nurses Health Initiative studies — there’s a new kid on the block. A new federal project, initiated as part of the Precision Medicine Initiative , aims to enroll a million volunteers willing to provide genetic and lifestyle information in an attempt to better understand what causes disease, and how to cure it.

Read about the study in a recent New York Times piece. This kind of data collection could create a real gold mine for researchers granted access to it later. But, think about what this means for our current notions of privacy — will language about keeping files “in a locked cabinet in a locked office” have any meaning when research subjects’ DNA and lifestyle details will be kept on some database somewhere? Just how secure will, or can, that database be?

And also think about the following quote in the article: “Perched on your shoulders will be the best and brightest researchers, working on your behalf.” That makes us wince a little inside, as we try to make sure potential subjects understand that researchers are primarily trying to collect data, and not work on subjects’ behalf.