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.
Then there is the matter of potential recrimination — from siblings, parents and children who share half of the participants’ genes and did not necessarily agree to display them in public. Prospective participants are advised to consult with first-degree relatives, but except for identical twins, their consent is not required. […]