On Wednesday, Stephen Colbert discussed genetic privacy with Steven Pinker, a psychology professor at Harvard who published his genetic sequence online at the Personal Genome Project. Colbert and Pinker talked about why someone would want to sequence and publish his DNA so that the general public could learn a wealth of sensitive data about him. Pinker said a person would want to get his DNA sequenced to learn about the “things you can do something about,” such as being a carrier for a disease or being at a higher risk of diabetes.
I think Pinker has valid arguments about the good that can come of sequencing your DNA. But, I believe there are significant problems associated with the widespread publication of your genetic data. Colbert asked, “You had your genome sequenced and then you put it on the Internet. Are you crazy? That’s like — that’s like posting the Social Security number that God gave you. I mean, that’s the ultimate identity theft, isn’t it?”
Pinker didn’t give much weight to the privacy question. “The parts of [the genome] that we do know how to read, I just don’t think the world really cares about,” Pinker said, joking that no one would care if he were lactose-intolerant. Colbert brought up the question of insurance companies or employers discriminating against individuals based on their DNA. Pinker pointed to the fact that states and the US government have passed laws attempting to protect genetic privacy.
However, there are numerous ways that genetic data can be used against an individual, and I believe the privacy risks are substantial and the protections are not strong enough for individuals to safely publish their DNA. There is an ongoing debate about the misuse and abuse of genetic data.