In 2008, a group of prominent scientists and entrepreneurs announced, after careful consideration, that they would make their genome sequences public, marking the launch of the Personal Genome Project (PGP). The “open source” genomics effort sought to make the genomes and medical histories of 100,000 people available for anyone to use. It was started by George Church, a genomicist at Harvard Medical School in Boston who was among the first 10 participants, or the “PGP-10.”
Now Church is taking his open-access genome model global. At a predictably packed press conference on 6 November, he announced the launch of a UK edition, and that a European franchise is on the way for 2014. A Canadian PGP started enrolling volunteers in December 2012.
The UK-PGP is aiming for another 100,000 participants. Stephan Beck, a genomicist at University College London leading the effort, says he is one of the 400 already on the waiting list. They plan to sequence 50 genomes in the first year.
In the five years since it started, the US edition has released 200 genomes and more limited genetic data on another 500, with a waiting list in the thousands. But Church expects growth to be exponential, once sequencing costs fall sufficiently.
In contrast to the United States, England has a publicly funded health care system in the National Health Service (NHS), with near-universal enrollment. This raises some interesting questions for the UK-PGP.
Like their American counterparts, UK participants will be asked to input their own medical histories to go along with their genome sequences. The questionnaire is exhaustive and it can take several hours to complete. But a patient’s NHS record — including the results of lab tests — would be even more helpful than patients’ self-reported information for scientists looking to correlate genetics and health. Beck says he hopes that NHS gives patients the option to upload their NHS records to PGP, but that is not yet possible.
Meanwhile, NHS England has its own genome sequencing effort, which is being led by a company called Genomics England with plans to sequence 100,000 genomes over the next 5 years. Beck says he has talked with officials there about collaborating. For instance, Genomics England could use a PGP data as a quality control, for a participant enrolled in both programmes. But Beck would like the relationship to extend even further. “We are very interested to work together with Genomics England to develop a procedure so those individuals willing to donate their genome can, so it becomes a PGP genome, and all associated data becomes open to everyone,” he says.
Genomics England, however, is eager to draw a distinction between it and PGP. “There are significant differences between PGP and our programme, notably that we are focusing on NHS patients with diagnosed diseases. We therefore have a different approach to privacy and data access and take this very seriously, because we have a duty of care to NHS patients,” executive chairman John Chisholm said in a press statement. A spokesman for Genomics England, Mark Palin, also questions whether patients would be able to release their NHS data through PGP. “I don’t know how it would work,” he says.
Nature has covered the US version of the PGP extensively (see: “Give me my genome”, “Nature readers flirt with personal genomics” , “Be prepared for the big genome leak”); and most recently, an op-ed in the magazine by Church advocated for more people to inspect their own genomes (see: “Improving genome understanding”).