[image from PGP website]
A new project by the Personal Genome Project (PGP) will create an open access (OA) human genomic database for scientists and others to study. Apparently, in the first Human Genome Project, linking biographical or phenotypic data from humans with their genomes was not kosher. The “genome” in the Human Genome Project was actually an amalgamation of male and female volunteers, with a big chunk of the genome from an anonymous donor from Buffalo, NY called RP11 (wiki), but with new technology scientists can speed up the sequencing process so many individuals can have their genome sequences. PGP will match genomes with personal traits, characteristics, and histories to make better inferences about genetic diseases, for example. They are taking applications now, and you can sign up to get on a waiting list as I have done.
We have come a long way in the last 15 years since Craig Venter and his company, Celera, refused to deposit their human genomic sequence in NCBI/GenBank and others who practice gene patenting deflated our collective tyres. I think that PGP understands the benefits of being OA, but I didn’t see anything on their website about a legal backbone to protect that access, such as a Creative Commons copyrights. I hope they will get some advice on this from librarians, lawyers, publishers, and others in the OA community!
The Personal Genome Project: “…an open-ended research study that aims to improve our understanding of genetic and environmental contributions to human traits. In the second half of 2008, we will begin to enroll members of the public who are willing to share their genome sequence and other personal information with the scientific 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.”
New York Times: “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.’ “
Wired Magazine: “George Church is dyslexic, a narcoleptic, and a vegan. He is married with one daughter, weighs about 210 pounds, and has worn a pioneer-style bushy beard for decades. He has elevated levels of creatine kinase in his blood, the consequence of a heart attack. He enjoys waterskiing, photography, rock climbing, and singing in his church choir. His mother’s maiden name is Strong. He was born on August 28, 1954. If this all seems like too much information, well, blame Church himself. As the director of the Lipper Center for Computational Genetics at Harvard Medical School, he has a thing about openness…”