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Freedom fighter. Stephan Beck at University College London wants to use the Personal Genome Project to make genome and health data freely accessible.

U.K. Researchers Launch Open-Access Genomes Project

Elizabeth Pennisi
2013-11-06 19:15

Efforts to put individual genome sequences and accompanying personal health information online in a freely accessible database just got a boost in the United Kingdom. On 6 November, Stephan Beck from University College London and his colleagues announced the establishment of a British Personal Genome Project (PGP-UK), which will recruit volunteers to provide DNA and health data with no restrictions on their use.

PGP-UK plans to sequence 50 British residents, age 18 or older, in its first year and ultimately hopes to enroll 100,000, Beck says. Some 450 people have already expressed interest, and the group has secured a year’s worth of funding and in-kind sequencing services. 

Britain’s PGP is an outgrowth of a project begun in 2005 by genome scientist George Church of Harvard University. At the time, genome data were often freely available, but health information was not because of privacy concerns. That made it difficult for researchers to link gene variants to specific conditions.

Church, however, argued that privacy could not be guaranteed, despite precautions, because of the power of modern computing and analysis methods—a prediction that has been borne out. As an alternative, he and others argued for a more transparent approach, in which individuals volunteer to have their genetic and personal health data posted online, with no promise of anonymity.

Church’s PGP Harvard has so far attracted more than 9000 recruits, 2900 of whom have PGP websites with their health data. Those 2900 have undergone extensive education, including an exam to make sure they understood the 24-page consent form. In addition to genomes, some participants provide tissue for stem and other cell lines.

To date, however, PGP Harvard includes fewer than 200 genomes, including Church’s. “There’s a challenge in coming up with the funds” for sequencing, he admits. His PGP covers the $2000 sequencing bill, and the money now comes from occasional private donations or donated sequencer time. But Church says he’s in no rush to enroll 100,000 people, a goal he called for rather arbitrarily when the project started. “The goals were just to demonstrate that it could be done and determine whether there were a lot of people who were interested,” Church says. Those goals have been met, he notes, and several similar PGP projects—in Canada, Germany, and Korea—are now under way or in the planning stages. “It’s suddenly going viral,” Church says.

A year ago, The Globe and Mail heralded the opening of PGP Canada with a 2-week series on personal genomics, promoting the series and the project on bus-stop billboards throughout the city. In an online survey, 80% of the more than 1000 respondents said they would have their genome sequenced. About 500 people have signed up for PGP Canada, whose goal was 30 genomes by the end of 2013 and 100 more the following year. Eventually, the hope is to get 100,000 or more participants, says founder Stephen Scherer, a geneticist at the Hospital for Sick Children in Toronto, Canada.

In Canada, participants themselves pay as much of the cost of the sequencing as they are able. For the next couple of years, support from the University of Toronto’s McLaughlin Centre and other assorted funds cobbled together by Scherer will cover PGP Canada’s annual budget, which totals several hundred thousand dollars annually. Eventually, he hopes to get a substantial government grant. “The issue is not the money, the issue is manpower to come up with standardized processing of the [participants],” Scherer says.

In Europe, a German PGP is in the works. And Korea has set up a website inviting participation in its own version of PGP.

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