A major new genome sequencing project for the UK is to be launched today.
The Personal Genome Project UK (PGP-UK) is an arm of the US-based Personal Genome Project UK and hopes to recruit 100,000 people to freely donate their genome sequences and associated medical data for research. Crucially, participants must consent to ongoing open access to their data; PGP-UK has addressed the issue of confidentiality by clearly stating that guaranteed anonymisation is not possible, even if participants withhold their name or image from their public profile (see previous news).
The project is also very clear that there are no guarantees of direct or personal health benefits from participation, and makes no attempt to downplay even the worst-case scenarios in examining potential risks, said to include the exposure of personal data that could reveal disease risk or paternity; affect employment, insurance or other financial issues; and even be used to falsely implicate a participant in a crime (though this would require a certain amount of ingenuity to perpetrate).
There are no apparent links with Genomics England (GeL), the Department of Health owned company charged with the delivery of the UK’s official 100,000 Genomes Project (see previous news); PGP-UK claims that its data will be of value to GeL, but its structure is not obviously compatible with GeL's mandate to create a secure genomic database with linked clinical data held behind an NHS firewall. Moreover, the 100,000 Genomes Project database is intended not only to improve patient health but also to be a marketable resource for the UK, offering paid access to commercial as well as academic researchers. An additional UK database of 100,000 genomes that is publicly available could significantly detract from the value of GeL’s offering.
The quality of data will be an important factor; GeL’s database, if it includes longitudinal links to NHS clinical records of participants with high quality phenotypic data as well as medical treatments and outcomes, could be much more valuable than an open access resource with inferior phenotypic and clinical data.
Whilst there is considerable scope for confusion between the two initiatives, it could also mean that the UK might end up boasting 200,000 human genomes. PHG Foundation Head of Science Dr Leila Luheshi praised the PGP-UK’s focus on ongoing educational programmes and discussion among participants, adding that: “Increasing awareness and understanding of the impact of genomics on health amongst the public will be vital” and help pave the way for the introduction of genomic medicine in the UK.
Much will depend on the success of this new initiative. Will the UK public, who have previously shown concern over issues of data privacy, be convinced by the altruistic aims of PGP-UK? Some may be more than happy to donate genomic and other data with a potential risk of future identification in the interests of furthering science and medicine. Others may find the prospect of a US-led project with Chinese sponsorship less appealing than one that seeks to generate wealth for UK plc as well as health for patients. Only time will tell.