The biggest data privacy laws that got passed in America, one of them seems really quaint right now—after the Clarence Thomas hearings your video records became the most protected information about you, so what videos you rented back when we had corner video shops are very highly protected....The other one, HIPAA, the protected health information rules, I think are tremendously destructive. I think they have not particularly protected people from powerful institutions like insurance companies who have a right to all your health information because they’re payers, and they’ve really interfered in all kinds of important ways with biomedical research.
IDEAS: Thirty years from now what do you see as the big information privacy concerns?
HUNTER: I kind of suspect that your genome is going to be everywhere, and they’re all completely unique—you can’t anonymize your genome any more than you can anonymize your signature. The consequences of that are going to be big. I suspect we’ll be able to tell some really important things about you by knowing what your genome is, sort of like Facebook can tell what your interests and behaviors are and what might motivate you to do something, I sort of suspect that knowing your genome will allow me to market to you in more effective ways than ever.
I worry a little about protecting people who have borderline disease areas. The person who is susceptible to excessive gambling—there’s probably some dopamine receptor polymorphism that says, yep, this guy is likely to be a problem gambler, and casinos marketing to him say, come, free chips—seems to me over a line that I’d like to see not crossed. I think we’re going to get there, and I’m not sure how society is going to make its decisions about how to use this stuff.
IDEAS: Many people are apathetic about the information they share on social media, but very attuned to the privacy stakes involved with their genetic information. Does that bode well for passing legislation and establishing norms that will protect that information?
HUNTER: I think people’s intuitions are largely screwy about their genetic information, although we have done something good and important with the Genetic Insurance Non-Discrimination Act, which says that basically genetic information can’t be used to discriminate against you in employment or insurance, and we’ve already had lawsuits that have been won.
So I think the important thing about genomes isn’t going to be keeping them secret, because I think that’s impossible. I think the important thing is making sure that we as a society come to conclusions about what is and isn’t permissible use of that information. Are we going to draw the line to say that people can’t market to you based on it? Judging from history, I’d say the odds are poor.
Kevin Hartnett is a writer who lives in Ann Arbor, Mich. He can be reached at email@example.com.