Blown To Bits

Genome Privacy

Tuesday, October 21st, 2008 by Harry Lewis

The New York Times reported yesterday on the Personal Genome Project, which is encouraging volunteers to put their genetic data online. As the story explains,

The goal of the project, which hopes to expand to 100,000 participants, is to speed medical research by dispensing with the elaborate precautions traditionally taken to protect the privacy of human subjects. The more genetic information can be made open and publicly available, nearly everyone agrees, the faster research will progress.

Early volunteers include my colleague Steven Pinker, the noted psychologist and my colleague on the Harvard faculty, and entrepreneur Esther Dyson. It’s wise that the first people in are well-educated, and fully able to assess the privacy risks. Still, the project raises some worrisome questions.

One of the more interesting paragraphs in the story is this:

“A potential boyfriend could look at my genome and say, ‘I don’t know if this relationship is meant to be,’ ” said John Halamka, a participant and the chief information officer of Harvard Medical School, who has a 15-year-old daughter. (His daughter, he said, told him that if a suitor did that, “I wouldn’t want them as a boyfriend anyway.”)

This seems to reflect a naive, open-book-or-shut model of human identity. We are who we are, and we can either manage our identity the old fashioned way, letting other people see a page or two at a time as we decide, or get it all out there at once ahead of time so no one is proceeding with imperfect information as the relationship develops. Of course we all have problems that are not genetic in origin, and moreover, we ourselves tend to change as we interact with others.

But the more troubling question is whether Dyson and Pinker and the other early adopters should make privacy decisions not only for themselves but for their grandchildren yet unborn. Who knows how, in 50 years, society will react to the knowledge that an individual has an above-average risk of carrying some genetic condition? These successful people are unlikely to be injured much by their disclosures, but they are leaking information about other people, who have no say in the matter. Is the immediate benefit to scientific research worth the risk?

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