European biobanking infrastructure to complete prototype system in 2010

The Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) has passed a major milestone by completing a review of more than 300 major European biobanks. Project managers Professor Kurt Zatloukal of the Medical University of Graz, Austria and Professor Eero Vuori...

The Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) has passed a major milestone by completing a review of more than 300 major European biobanks. Project managers Professor Kurt Zatloukal of the Medical University of Graz, Austria and Professor Eero Vuorio of the University of Turku, Finland spoke with CORDIS News about BBMRI's current efforts to make the collective content of the biobanks available to researchers, and to develop a 'prototype' system that they hope will be functional by the end of 2010.

BBMRI's preparatory phase is funded with EUR 5 million through the EU's Seventh Framework Programme (FP7) as one of several important research infrastructures of pan-European interest. BBMRI seeks to provide researchers with access to a Europe-wide collection of biomedical quality-assessed samples and data to treat and prevent human diseases.

'For the first time we have a real map, or landscape, of what type of resources are really available in Europe,' said Professor Zatloukal of the recent biobank review. The budding research infrastructure comprises 51 participating institutions and190 associated organisations, representing 30 EU and associated countries.

The next step for the project is to develop a prototype system, working with the most advanced biobanks that pose the fewest difficulties and adding others as they are ready. The project partners expect this prototype, which closes a potential gap between the planning and implementation phases of the project, to be functional by the end of 2010.

'This is one area where Europe is clearly ahead of all of its competitors,' said Professor Vuorio. 'We have more samples and data relating to samples than anyplace in the world. Europe has a long tradition of collecting samples and that is a major advantage. [¿] The aim really is to try to make the best use of the advantage that we have.'

'We have a real outstanding opportunity in Europe because all of these six life-science infrastructures now in preparatory phases, including those that are now on the new roadmap, share a lot of synergies,' added Professor Zatloukal. For example, each infrastructure has a bioinformatics requirement, and most of them have a biobanking requirement, with which BBMRI can help. The infrastructures, he said, could have 'a major impact on the improvement of European competitiveness in a global context'.

Professor Vuorio emphasised the importance of coding all samples appropriately so that patients' privacy is protected; also, he said, researchers are interested in large groups rather than individuals. 'We have to remove all the identifiers so that researchers cannot trace back [...] the person who generated some samples for research,' added Professor Zatloukal. The goal is to aggregate the highly distributed data, which is collected at university hospitals and public research centres, and provide common access. The Web interface used by researchers planning their projects will show only data relating to groups of persons that share common features, he said, rather than information related to an individual person.

Speaking on the challenges currently faced by the project partners, Professor Vuorio said, 'Surprisingly, the technical issues are the easiest ones.' One major IT challenge is to maximise the value of the samples by connecting as much relevant information to them as possible; this is not simple, as samples collected long ago might be missing information that today would be considered crucial. 'It has been done differently in different countries, and usually in the local language,' Professor Vuorio explained. Another challenge is creating a harmonised database using data stored in systems that are not currently compatible.

Evaluating the quality of the samples themselves so that they can be used to the best advantage is another major undertaking. 'Standardisation and harmonisation are the key technical goals,' explained Professor Vuorio. Starting with sample collection, all participating biobanks need to agree on standardised ways of treating the material from the very beginning. Regarding existing samples, though, it is hard to know exactly how a 20-year-old sample was initially treated.

But the major bottlenecks lie in harmonising the widely different ethical and legal requirements of each of the Member States. Education about and attitudes towards biomedical research differ between countries, as do interpretations of EU legislation such as the Data Protection Directive. Importantly, it is necessary to obtain 'informed consent' from anyone donating samples for later research, but it's hard to know how the samples will be used in the future. 'We now have to collect the samples that lay the foundation for research in the next 10 to 20 years,' said Professor Vuorio, 'but it's very hard to predict what will be relevant'.

'I think [none of] us could have a clear vision of how science will look 20 years from now,' added Professor Zatloukal. 'We need a good governance structure to integrate and to manage such a highly distributed infrastructure, at the same time keeping it flexible enough to respond to new challenges and emerging needs.'

To have a better understanding of how the public in different parts of Europe perceives biomedical research, BBMRI is conducting focus-group work and has included key questions about biobanking in the latest Eurobarometer survey. A major stakeholder meeting, including patient organisations, medical associations and industry, will be held in Brussels in September.