Misha Angrist, Duke University geneticist, speaking at the National Cancer Institute:
My position is this: genetic privacy is a red herring. That’s not to say that it’s not important or that it should be abolished, but let’s look at it for what it is: a legacy of the abuses perpetrated by the 20th-century eugenics movement that has become a convenient way to limit institutional liability. It begins from the premises that data about human beings 1) can be kept private; and 2) should be kept private. At all costs. Lock it up and throw away the key unless, you know, someone might die and we might get sued. It makes no allowances for where the locus of control over this information lies or whether it should change, let alone whether it can change. But we are here today because we are up against a new reality: Traditional genetic privacy cannot assimilate a Facebook-driven world, let alone one driven by empowered patients and research participants who suddenly have an array of choices.
