Last month, the UK branch of the Personal Genome Project (PGP-UK) went online, following the American project started by genetics professor George Church and colleagues at Harvard Medical School in 2005.
These projects, in addition to a Canadian project and similar ones slated for South Korea and Germany, seek to establish databases that provide individuals’ genomes alongside their medical histories. These databases are completely accessible from the project websites, both providing unprecedented opportunity for researchers and raising privacy concerns among many.
The PGP-UK is structurally identical to the Harvard-run project. “The key aspects of the [project] started at Harvard have been completely taken aboard,” said Stephan Beck, PGP-UK director and professor of medical genomics at the University College of London Cancer Institute. “I don’t think we differ in any way at all.”
However, each project is autonomous. “We felt that we should have entirely independent research teams in each country, maybe even more than one per country, because of the laws, customs, and language barriers from region to region,” said Church, director of the Harvard PGP. “The UK project is a pretty big deal in that England tends to be very forward-looking in genetics.”
Church said that the American team assisted the British team only with experience, computational infrastructure, and the project’s consenting mechanism—a rigorous test that ensures participants’ understanding of the risks of putting their genetic and medical information in the public eye. Each potential participant is prohibited from participation until he or she scores 100% on this test. According to the project website, risks include the use of information to determine paternity, to falsify DNA evidence, and to identify genetic predispositions towards certain diseases.
The last item has been a particular cause of concern to critics of the project, due to the perennial fear that genetic weaknesses may come to influence individuals’ chances of getting insurance and their rates. This fear is coupled with general concerns about privacy, as corporate data-mining practices and government attention to individuals’ digital information increase. However, Church has argued that privacy cannot be protected against cyberattack anyway, and as a result strongly favors a totally open database with all the data that researchers need.
Since its establishment, the American project has uploaded 3,141 online participant profiles to date, many of which include the complete medical histories and genomic sequences of individuals. The British project will start with 50 volunteers in its first year and aims to work up to 100,000 individuals with time. Any party can access the information. “It’s like Wikipedia,” Church said.