Privacy-Preserving Computation of Disease Risk by Using Genomic, Clinical, and Environmental Data

Erman prefaced his presentation with the disclaimer that “the talk will be mostly dominated by Genomics,” and the discussion quickly lead into the proverbial security-oriented rabbit hole; genomic sequence data is yet another sensitive source, perhaps more so than others, and thus requires adequate protection by way of confidentiality. But just how sensitive is the genomic data? Erman led the definition of sensitivity with the question, “Why do we care about protecting genomic data?” The answer is more jarring than the usual financial ruin and public display of intimate correspondence. The genomic sequence of any physical actor represents an irrevocable fingerprint that not only uniquely identifies the individual, but also reveals a great deal about the person’s family lineage. Worst yet, services that utilize genomic data to trace personal ancestry and preemptively identify genetic disease risk, such as Ancestry.com and Counsyl.com, are not subject to regulatory compliance with respect to confidentiality.