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A big step forward for European biobanking

This article was originally published in Scrip

Companies and researchers working on potential therapies for cancer and other diseases could soon benefit from a Europe-wide collection of biological samples and data for use in disease treatment, diagnosis and prevention.

The Biobanking and Biomolecular Resources Research Infrastructure (BBMRI), which was set up last year to establish a network of existing and new biobanks, has just completed a review of more than 300 major European biobanks.

The biobanks hold collections of blood, DNA, tissue and other substances, together with medical, environmental, lifestyle and follow-up data, integrated with the necessary enabling technologies and tools to facilitate the analysis and deciphering of genes, proteins, metabolic functions and their interactions.

The BBMRI, which is still in its preparatory stage and initially funded by the EU's seventh framework programme, plans to bring all these resources together to establish a harmonised European database of biological samples and data that are stored in currently non-compatible systems. It expects a prototype system, initially involving the more advanced biobanks, to be ready by the end of 2010.

It is an ambitious project. But according to co-manager Professor Kurt Zatloukal of the University of Graz, Austria, good progress has already been made, and with the review of the European biobanks now complete, "for the first time we have a real map, or landscape, of what type of resources are really available in Europe".

Capitalising on resources

Biobanking is not a new concept: scientists have been collecting and storing biological samples for decades, and at the global level there are now hundreds, maybe thousands of biobanks.

But as drug target validation, biomarkers, genomics and proteomics play an increasingly important role in disease diagnosis and treatment, and with the growing emphasis on personalised medicine, researchers in both the public and private sectors will need access to ever greater numbers of biological samples.

The discovery of critical genes and pathways, as well as the follow-up analysis of their impact and significance, will increasingly depend on having banks of up-to-date epidemiological, clinical and biological information together with accompanying material from large numbers of patients and healthy people representing the general population.

The BBMRI, which involves 51 scientific groups across Europe in association with 180 other groups working in this area, says that European biobanking bodies currently manage more than 10 million samples, and that its aim is to increase this number while improving quality and reducing fragmentation.

As well as setting up a network of major European biobanks, it plans to establish clear rules on access to samples and data and co-ordinate the development of resources and technology.

Hub structure

The network will take the form of a distributed hub structure that will contain various biobank formats, biomolecular resources (antibody and affinity binder collections, siRNA libraries and proteins), enabling technologies and high-throughput analysis platforms.

"Biobanks, if well collected, characterised and accessible, provide a critical competitive advantage for the advancement of biotechnology, and human health and disease related activities in Europe," the BBMRI says. "Biomedical quality-assessed samples and data as well as biomolecular resources and molecular analysis tools are essential for academic and industry-driven research to treat and prevent human diseases."

A central aim of the BBMRI project is to allow closer collaboration among researchers, clinicians and molecular biologists, and to partner with the pharmaceutical, biotech and computing industries.

The initiative is expected to speed up the development of personalised medicine and disease prevention, while helping to reduce the bottlenecks currently bedevilling R&D in the pharmaceutical and biotech industry – a question that is also being addressed by the EU's Innovative Medicines Initiative, to which the BBMRI project is linked.

Will it work?

It all sounds very promising, but will that promise be borne out? A lot of hurdles – both technical and ethical – will have to be overcome if the biobank network project is to become a reality.

For instance, all the biobanks taking part in the initiative will need to agree on standardised ways of dealing with the material and data available. Moreover, said the project's other co-manager, Professor Eero Vuorio of the University of Turku in Finland, the value of the samples will need to be maximised by connecting as much relevant information to them as possible.

This will be difficult because samples are collected and collated differently in the various countries, and often in the national language, and moreover the systems used to store the associated data are not necessarily compatible.

Another challenge is coding samples so that donors' privacy is respected. This means removing all the identifiers so that researchers cannot trace back the sample to the person who generated it, Professor Vuorio pointed out.

The BBMRI plans to aggregate the data collected at university hospitals and research centres and provide a common access point via a web interface that will show only data relating to groups of people with common features, rather than information on an individual person.

Also to be addressed are the widely divergent ethical and legal requirements in the EU member states, which often interpret the EU data protection Directive differently.

Stakeholder forum and meeting

In order to ensure maximum involvement and input from all players, the BBMRI has set up a stakeholder forum to gather the views and requirements of all interested parties: patients, clinicians, industry, funding bodies and project partners.

To take the initiative a step further, it is to hold a stakeholders' information and discussion meeting on September 16th in Brussels, Belgium. Issues to be addressed include the management and co-ordination of the BBMRI, molecular tools, database harmonisation, funding, and ethical, legal and societal issues. The results of this meeting will feed into the further development of the project.

Having access to the widest possible selection of biological samples is a key component of modern-day drug research and development, where personalised medicine and genotyping play an increasingly vital role.

The BBMRI says it intends to be a "pan-European framework to foster excellence in biomedical research". If the technical and ethical hurdles to creating a network on this scale can be surmounted, the result should be of great benefit to researchers, companies and patients alike.

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