Exposing Your Genome Through Harvard's Personal Genome Project
A project at Harvard, the Personal Genome Project, is publishing the complete genomes of 10 volunteers including Harvard psychology professor Steven Pinker. The project is experimenting with the consequences of revealing one's genome.
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.
In exchange for the decoding of their DNA, participants agree to make it available to all — 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.
Including phenotypes, which most other public genetic databases have avoided in deference to privacy concerns, should allow researchers to more easily discover how genes and traits are linked. Because the “PGP 10,” as they call themselves, agreed to forfeit their privacy, any researcher will have a chance to mine the data, rather than just a small group with clearance.
The project is as much a social experiment as a scientific one. “We don’t yet know the consequences of having one’s genome out in the open,” said George M. Church, a human geneticist at Harvard who is the project’s leader and one of its subjects. “But it’s worth exploring.”
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.
