Ten intrepid genetic explorers have volunteered to have their genetic information posted on the Internet for anyone’s perusal, along with photographs, their disease histories, allergies, medications, ethnic backgrounds and a trove of other traits, called phenotypes, from food preferences to television viewing habits [The New York Times]. The 10 volunteers are the first participants in the Personal Genomics Project, an endeavor run by Harvard Medical School that hopes to offer free genetic testing to 100,000 people in exchange for their privacy.
The project aims to advance genome research by tapping volunteers who have a Facebook-mentality sense of privacy–minimal–and enough excitement about genomic science that they are willing to lay out their genetic and medical information so any researcher can sift through it for links between genes and traits. “There’s a hope that by making these data public, you can harness crowd-sourcing power in the same way that Wikipedia and YouTube and Google and Linux all emerged from cooperative, distributed efforts” [Boston Globe], said Harvard psychology professor Steven Pinker, who is one of the 10 pioneers.
Researchers admit that the project is as much a social experiment as a scientific one, and say that the ramifications of having one’s genetic information in the public eye aren’t yet known. A new federal law prohibits health insurers and employers from discriminating against individuals on the basis of their genetic profile. But any one of the PGP 10 could be denied life insurance, long-term care insurance or disability insurance, with no legal penalty. And no law can bar colleagues from raising an annoyed eyebrow at a PGP participant who, say, indulges in a brownie after disclosing on the Internet that she is genetically predisposed to diabetes [The New York Times].
The project required the first 10 participants to have extensive knowledge of genetics to ensure that they understood what conclusions could be drawn from their online genetic profiles; the so-called “PGP-10” include the Harvard professor who initiated the project, George Church, as well as investors and businesspeople involved in personal genetics companies.
These first volunteers are a healthy group, and the information posted so far doesn’t reveal any devastating health problems. The participants are more likely to learn that they are at a modestly increased risk of some common diseases. John Halamka, chief information officer at Harvard Medical School, got an early peek at his genomic information and discovered that he has double the average risk of obesity. “Even with this imperfect screening tool, if someone had told me 10 years ago I was at twice the risk of obesity, I would have stopped the cheeseburger, doughnut, and two lattes a day habit much earlier,” says Halamka [Technology Review].
80beats: NIH Yanks Genetic Databases From the Web, Citing Privacy Worries
DISCOVER: How Much Can You Learn From a Home DNA Test?