Five years after the UK Biobank first won financial backing in principle from the Wellcome Trust and the Medical Research Council, it has just about reached the point where bricks and mortar are being added to grand ideas and cautious plans. (When was originally approved in 1999, the Biobank resembled the UK Population Biomedical Collection, which sounded more like something you could order from a curio shop at the Census Bureau than a repository for tissue samples.)
So even as Biobank fever around the world has taken a few missteps (witness recent events in Estonia and Iceland), several key pieces will start falling into place this year for the UK resource, which aims to collect genetic, health, and lifestyle data from 500,000 participants.
In December 2003 a company formed by the UK Biobank's funders to operate the project was finally incorporated. Until that point, "we couldn't employ anybody, we couldn't take a lease on the offices or anything," says John Newton, the project's CEO. Newton has held this position since April 2003.
With that hurdle out of the way, the UK Biobank chiefs have now decided that facilities for storing participants' samples will be based in Manchester, where the organization's growing number of staff are currently based. "We're negotiating with landlords on exactly where, but there aren't many places you can put a facility like ours," Newton says.
Storing samples from half a million participants will require a fairly large chunk of land. Two storage facilities will be used: a backup store using liquid nitrogen flasks, and a -80°C freezer store, says Newton. "We need to be able to get the samples out easily, because it's a resource to supply a large number of different projects," he adds. "So we're almost certainly going to use a robotized picking system to retrieve the samples."
Manchester and a number of other universities submitted bids to host the coordinating center. A Biobank spokesperson says the city won because it had the most appropriate scientific and technical environment to support the project's infrastructure. "Manchester also has a very strong biotechnology base, so having the sample storage and processing sites here makes perfect sense," he says.
After an international tendering process, UK Biobank hopes to commission the archive in September, says Newton. Full participant recruitment is planned to start in September 2005, but he doesn't expect the final archive facility to be ready until the end of 2005, which will necessitate some sort of temporary arrangement for about three months.
In the meantime, exploratory pilot projects planned for September will test out various elements of the process. And in early July, the UK Biobank published proposals for how it was going to collect, store, retrieve, and analyze those millions of samples. "We owe it to our future participants to have considered very carefully how best to handle their samples," Newton says. "We want the information from these samples to benefit the health of future generations, so we can't afford to get this wrong."
The proposals recommend that samples from participants should undergo an initial battery of biochemical tests, as well as cell analysis for blood samples. The samples will then be divided, processed, and stored for potential future analysis in various forms to maintain their long-term integrity; more than 14 million individual samples are expected.
The UK Biobank hopes that the paper will inform some of the other large-scale projects throughout the world. Indeed, projects in Asia and elsewhere are joining those already established in Estonia (1999) and Iceland (1998). Even the National Institutes of Health is thinking of jumping on the bandwagon.
But news about projects that got off the ground faster than the UK's has been less than universally fantastic. Apart from initial ethical questions, the Icelandic project suffered recent problems with gaining participant consent for certain activities, and the Estonian study has struggled with funding. From this perspective, the cautious approach of the UK project looks sensible.
Still, it's going to take five years to recruit the study population, so it would be completely wrong to rush the early stages, Newton says. "We're learning from those two projects," he adds. "I think we're all feeling quite confident. We've consolidated and I think we've got a much better idea of what we're doing and what the likely benefits going to be ... and most importantly we've established some infrastructure to take us to the next stage."