The Personal Genome Project launches today. Visitors can take a look at the genetic information of such luminaries as Harvard psycholinguist Steven Pinker and tech venture capitalist Esther Dyson. The project website explains:
We believe individuals from the general public have a vital role to play in making personal genomes useful. We are recruiting volunteers who are willing to share their genome sequence and many types of personal information with the research community and the general public, so that together we will be better able to advance our understanding of genetic and environmental contributions to human traits and to improve our ability to diagnose, treat, and prevent illness.
What's more the project is looking to sign up 100,000 individuals who agree to let their genetic information be posted on the internet where researchers can mine it for genetic links to disease and health. As the New York Times reports:
The goal of the controversial 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. In exchange for the decoding of their DNA, participants agree to make it available to all — along with photographs, their disease histories, allergies, heights, weights, medications, ethnic backgrounds and a trove of other traits, called phenotypes, from food preferences to television viewing habits.
Collecting phenotypes, which other 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 can mine the data, rather than just a small group with the proper clearance.
But 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, but it's worth exploring," said George M. Church, a geneticist at Harvard who is the project's leader and one of its first subjects.
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.
Because of the risks, Church required the first 10 participants to demonstrate the equivalent of a master's degree in genetics. Most are either investors or executives in the biomedical industry, or else teach or write about it, so they may have a financial interest in encouraging people to part with their genetic privacy.
The project has drawn criticism from scientists and bioethicists who caution that even its highly educated volunteers cannot understand the practical and psychological risks of disclosing information long regarded as private. "I'm concerned that this could make it seem easy and cool to put your information out there when there is still a lot of stigma associated with certain genetic traits," said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University. "There will be new uses of this data that people can't anticipate — and they can't do anything to get it back."
Go here for the Personal Genome Project's website and maybe even sign up.