Genetic Privacy: An Outdated Concern?

George Church, a participant and leader of the Personal Genome Project at Harvard Medical School, undergoes a skin biopsy. Scientists will develop cell lines from Church’s skin cells, which will be distributed to scientists around the world for research. Credit: Personal Genome Project.

The vote was unanimous. Every one of the PGP-10–the first 10 volunteers for the Personal Genome Project–decided to make the genomic information he or she has received so far public, along with his or her medical and other trait information. (For background on the project, check out yesterday’s “Genomes on Display.”) The group revealed its decisions at a press conference at Harvard Medical School on Monday afternoon.

None of the information that the participants have learned is likely to be life shattering. Harvard psychologist Steven Pinker, for example, learned that, according to the study’s results, he has some susceptibility to irregular menstrual periods and to being born prematurely. “I’m not too concerned about that,” he said at the press conference. Clearly, neither of these variations is important for Pinker’s health, although theoretically, this information might be of interest to future Pinker generations who inherit them.

John Halamka, CIO for Harvard Medical School, carries a mutation for hereditary motor and sensory neuropathy with optic atrophy, a childhood neurological disease. But since Halamka survived childhood unscathed, and only three other people in the world have been shown to carry that particular mutation, it’s hard to know what impact, if any, it has had on his health. (George Church, who heads the project, also noted that given the preliminary nature of the data released on Monday, the finding might be an error.)

Before the PGP-10 revealed its decisions to the world, the group spent the day discussing some of the issues that the unique project raises–especially the issue of privacy. The plan for the PGP is to make all aspects as open as possible, from the technology that is developed to the medical and genetic information of the participants. The rationale is that it is difficult to promise research subjects anonymity when the data being collected includes genetic information–the ultimate personal identifier–so it’s better to make everything open from the get-go.

“We are at the beginning of a revolution in health care: huge numbers of us will have our genomes sequenced for medical, forensic, or military purposes, and the notion that information can be kept private is nuts,” said Stan Lapidus, CEO of Helicos Biosciences. “Part of the PGP is to understand how our lives are affected. I have a hunch it will be not a lot.”

Entrepreneur Ester Dyson said that she wanted to bring genomic information into the realm of the mundane. “I want to show people this information is not inherently dangerous,” she said. “Information when misused is always dangerous, but it’s more dangerous when people attribute something mystical to it.”

Still, if they change their minds, the participants will be able to block or redact any information–as much as that can be done. Pinker, for example, said that he isn’t sure if he wants to know whether he carries a genetic variant that dramatically increases his risk of Alzheimer’s disease. But because of the way that DNA is inherited, it’s possible to determine whether someone likely carries the variation by the code of neighboring DNA. In addition, Church and his collaborators are creating and distributing cell lines made from participants’ skin cells, which means that their DNA could be sequenced by anyone studying the cell lines.