Time is running out for disease. The Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) has a pan-European scope that could lead to significant scientific breakthroughs – and according to BBMRI coordinator Dr Kurt Zatloukal the organisation will be operational by the beginning of 2012.
"We are advanced in preparing for European Research Infrastructure Consortium (ERIC) statute," he says. "All BBMRI member states have committed to the funding and strategy for ERIC, which was set by consensus. We've decided on where our headquarters will be, but we won't announce that until we submit our ERIC application, which will be towards the end of summer.
"The application should take nine to 12 months to go through, which means that BBMRI should be established by autumn 2011. We then have to implement the governance structure, appoint a director general, employ staff and set up the structure. I think we'll be operational by the beginning of 2012, maybe slightly earlier if things go really well."
ERIC: a new model for research
BBMRI's ten to 12 founding member states will provide between ten and 30 biobanks each, and it is expected that a network of approximately 200 biobanks will exist across Europe. Although this will mean BBMRI is integrating the largest collection of samples and data in the world, Zatloukal is keen to focus on the organisation's other strengths, one of which is ERIC.
"We will be one of the first organisations to be granted ERIC status," he says. "This will give us a number of advantages, the main one being that we can operate under one set of legislation in different member states. That means there will be clearly defined responsibilities, quality standards and common procedures whatever country we're in.
"ERIC status also means we're exempt from paying VAT, which is important as some member states might be reluctant to contribute in areas where others would benefit from VAT. This paves the way for joint contributions from all members."
Biobanks are redundant without patients, but the early signs are that BBMRI will be well supported in that department. Patient organisations from across Europe attended a stakeholder meeting in Brussels in June 2010 to have their say in how BBMRI should develop.
"It is important for us to know what patients need in order to feel protected," says Zatloukal. "The patient organisations made some recommendations that are in line with our goals. It was a very positive meeting and it is clear there is a lot of altruism there. The patient organisations want to work with us and establish a fruitful partnership, which is one of the strengths of BBMRI. They've had a real input in helping to design how BBMRI should work."
BBMRI hopes to eradicate two of the greatest problems associated with medical research – industry access to patients and data wastage – through the creation of expert centres around Europe.
to eradicate two of the greatest problems
of medical research – industry access to patients and data wastage."
"Although industry would be willing to pay for access to samples, human biobank samples cannot be sold as it is not compliant with legal requirements," says Zatloukal. "Doctors and patients would find it unacceptable but the alternative, providing public resources for free to industry, is also unacceptable to many in the academic world.
"Our solution is to find a way to research in the context of scientific collaboration. Our expert centres will create a framework for industry and academia to share expertise and do investigations together. This will mean that industry contributes money and valuable data into the public domain, which could help researchers to use data gleaned by others.
"At the moment industry may work on a whole genome, take the bits of information they're interested in and leave the rest sitting in a drawer. Using our system other scientists will be able to access research and retrieve information from the data generated that is relevant to them, which could help reduce research time and costs significantly.
"People think that biobanking is just about providing samples but it is much more than that. There's a lot of knowledge wrapped up inside individuals. You can't access it by shipping off a sample, so we're creating a framework for industry and academia to meet and share knowledge face to face."
The big hope for BBMRI is that through shared access to thousands of patient samples and stacks of data, scientists will be able to collaborate and lay the foundations for a move towards personalised medicine.
"Producing personalised medicine is one of the major challenges of the future," says Zatloukal. "What works for one person doesn't necessarily work for another. Medicine needs to develop to a stage where doctors can prescribe the right medicine for the right person to be given at the right time. We will try and lay the foundations for this with our research projects. BBMRI is unique. There's nothing like it elsewhere and that means we can tackle questions that have not been possible before.
"Does that mean we'll finally be able to find a cure for cancer? We should be very cautious in promising that. We've heard it so many times that it is a dangerous thing to say. However, what we can say is that our work should mean that diagnosis is more specific in future and, therefore, treatment ought to be more effective."
Stem cell research
Embryonic stem cell research is one of the most contentious areas of modern science, but it has the potential to blow the BBMRI's European entente to smithereens. The UK and Holland has a permissive attitude to the use of embryonic stem cells in medical research, but the likes of Italy, Ireland and Germany remain distinctly opposed. So how can they deal with this?
"It is true that there are very different attitudes to the use of embryonic stem cells in different member states," says Zatloukal. "It is my view that we will have to work with embryonic stem cells but only as part of a much wider investigation and only under well-regulated conditions. I think the future lies in adult stem cells and reprogrammed stem cells – they will play a significant role in the future of biobanking."
Although still at least 18 months away from becoming fully operational, BBMRI is aiming big in terms of its impact on scientific research and beyond.
"One of the big challenges of the future is how to better integrate Eastern European countries with the rest of Europe," says Zatloukal. "There is a marked imbalance between Eastern and Western Europe in terms of healthcare. Biobanks could be a powerful instrument in identifying fields that need investment and bringing the eastern countries more into the fold.
"I think that BBMRI could lead to a paradigm shift in biobanking research. It will highlight the value of collaboration by demonstrating the benefits of joint industry-academia research. This could not only alter traditionally held views of what research is, but also transform the public perception of science."