The genetic data posted online seemed perfectly anonymous — strings of billions of DNA letters from more than 1,000 people. But all it took was some clever sleuthing on the Web for a genetics researcher to identify five people he randomly selected from the study group. Not only that, he found their entire families, even though the relatives had no part in the study — identifying nearly 50 people.
The researcher did not reveal the names of the people he found, but the exercise, published Thursday in the journal Science, illustrates the difficulty of protecting the privacy of volunteers involved in medical research when the genetic information they provide needs to be public so scientists can use it.
Other reports have identified people whose genetic data was online, but none had done so using such limited information: the long strings of DNA letters, an age and, because the study focused on only American subjects, a state.
“I’ve been worried about this for a long time,” said Barbara Koenig, a researcher at the University of California in San Francisco who studies issues involving genetic data. “We always should be operating on the assumption that this is possible.”
