The International Herald Tribune reports on a research project where people share information about their personal genomes: the Personal Genome Project.
Excerpt from a 3-page profile and report:
PGP is “a study at Harvard University Medical School aimed at challenging the conventional wisdom that the secrets of our genes are best kept to ourselves.
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 Church, a human geneticist at Harvard who is the project’s leader and one of its subjects. “But it’s worth exploring.”