Privacy in the post-genomic era: Impossible

Thursday, January 14, 2016

Privacy is a fanciful delusion in the post-genomic era, or so said Christopher Mason during a consumer genomics panel at this week’s J.P. Morgan Healthcare Conference.

“I think privacy is going to be really hard to keep, unless you walk around in a hermetically sealed plastic suit,” said Mason, an assistant professor of computational genomics at Weill Cornell Medical College. “You lose cells wherever you walk.”

As a case in point, he gestured to the audience at JPM – and said if everyone left the room, and their DNA was sequenced simply from the genetic material they left behind on the seats, the results would be highly revelatory.

It’d be possible to determine ancestry distribution, simply from the genome. And if epigenetics, the microbiome and the metagenome were plumbed – we could measure the age, what we look like, our voice, our face. In essence, it’d be possible to reconstruct the room, simply from a few cells left behind on each seat.

This is a perspective that’s fairly unpopular – ask most genomics stakeholders and they turn green when you mention Gattaca, for instance. But it’s an eventuality that we can’t pretend isn’t there. It’s looming, in fact.

Of course, medicine is evolving its expectations of privacy, and participatory medicine is on the rise. A lot of people are willing to forgo privacy to benefit broader medical good – turning over their genomic information in hopes to help further research.

“Since privacy is moot anyway, the bigger thing I worry about is discrimination,” Mason said. “My worry’s not privacy, but discrimination that’s still legal.”

It’s still legal to take that DNA left behind on the chair, and use it to change an insurance policy, Mason said. As genomics grows more powerful, law schools will have to change their definitions of what privacy entails, Mason said – and what reasonable expectations of privacy are.

This article first appeared in MedCity News.