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Ten people today allowed their genetic maps to be publicly displayed on the Web in the name of research. The effort is part of Harvard Medical School's Personal Genome Project (PGP), which aims to create a large public database of human DNA to aid researchers in their quest to find the causes and cures for genetic maladies.
The first 10 volunteers, dubbed the PGP-10, include project director and Harvard Medical School geneticist George Church; Harvard psychologist Steven Pinker; technology writer Esther Dyson; Duke University science editor Misha Angrist; Keith Batchelder, CEO of Genomic Healthcare Strategies in Charlestown, Mass.; Rosalynn Gill, founder of personalized health company Sciona in Aurora, Colo.; John Halamka, technology dean at Harvard Medical School; Stanley Lapidus, chairman and CEO of Helicos BioSciences Corp. in Cambridge, Mass.; Kirk Maxey, founder of the research biochemical company Cayman Chemical based in Ann Arbor, Mich.; and James Shirley, senior scientist at the Boston Biomedical Research Institute.The reason they signed up? "It wasn't so much a curiosity about my genome as a desire to be part of a group that is engaging a public dialogue about the issue of genetic privacy," volunteer Lapidus said during a press conference held at Harvard yesterday to announce the launch. Although all of the participants agreed to be identified, their genomes are not labeled by name. The data was published anonymously on the Personal Genome Project website. Info on their medical history, ancestry, and current meds was already available but not linked to specific participants. The researchers used blood or tissue samples to screen for genes related to diseases, such as Alzheimer's and breast cancer.Church explains in this Scientific American article how relatively inexpensive DNA sequencing technology works and why he believes this project has the potential to change the face of medical research.Dyson argues in Scientific American that privacy issues may be a concern but that it's overshadowed by the fear that insurance companies will refuse to provide coverage or will charge sky-high rates if aware that someone has a pre-existing genetic condition or risk of developing a certain disease. Interested in having your health history and genes published online for the benefit of science? The project got approval this spring to expand the project to 100,000 people, and they're looking for volunteers.