|Matthew Dublin is a senior writer at Genome Technology.|
Big Data Is "Creepy"
While Boyd spends most of her efforts studying privacy and children's use of social media platforms like Twitter and Facebook, she pointed to personalized genetic data as an example of just how creepy things can get. "If I give away data to 23andMe, I'm giving away some of my brother's data, my mother's data, my future kid's data. … Who owns the e-mail chain between you and me?"
Boyd's discussion is explored on The New York Times' Bits blog in a post by Quentin Hardy. In it, Hardy points out that the definition of privacy changes depending upon who you're talking to, but regardless of the definition, privacy is not the same as security or anonymity — two things no one really has anymore.
But whereas youngsters can hide their identities and lives on Facebook in plain sight by continually destroying and creating new accounts or steganography, ensuring privacy within the realm of personalized genomics is exponentially more complex. For that, the only antidote is regulation, because right now, ignorance is breeding anxiety.
"Regulation is coming, you may not like it, you may close your eyes and hold your nose, but it is coming…Technologists need to re-engage with regulators — we need to get to a model where we really understand usage," she says. "We have very low levels of computational literacy, data literacy, media literacy, and all of these are contributing to the fears."