Unidentified Flying Subjects

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Last week I was at the National Cancer Institute Think Tank on the Identifiability of Genomic Data and Biospecimens, a gathering of a few dozen people aimed at hashing out how human tissue and genomic data should be handled in the era of dirt-cheap DNA sequencing and ubiquitous sharing of information. It was fascinating, exhilarating, frustrating and exhausting.

The current rules that govern how tissue and data are managed, whether by design or not, encourage the severing of the links between research participants and those who study them. As most of y’all know, I think this is a mistake, and in my keynote speech I said as much to my colleagues in Rockville:

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.

 

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