On Monday, they may learn the answers to these and other questions — and, if all goes according to plan, so will everyone else who cares to visit a public Web site, www.personalgenomes.org. The three are among the first 10 volunteers in the Personal Genome Project, a study at Harvard University Medical School aimed at challenging the conventional wisdom that the secrets of our genes are best kept to ourselves.Ironic that this project about genetic transparency uses the acronym PGP, also used for Pretty Good Privacy, a way to encrypt computer files.
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.
via NY Times