Project paves the way towards a pan-European biobanking infrastructure
A EUR 5 million EU-funded project has begun preparatory work for the launch of the pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI). The infrastructure will help scientists study the environmental and genetic factors which cause diseases, develop more precise diagnostic tools and speed up drug discovery and development. Biobanks are collections of biological material, such as DNA, tissue, cells and blood, and the data that go with each sample (in the form of medical records, environmental information, lifestyle information and follow-up data, for example). The current project aims to link up and facilitate access to European biobanks of human material. Europe has a wealth of biobanks in its hospitals and research centres, yet these are rarely linked up, and as BBMRI project coordinator Kurt Zatloukal explained, 'no-one knows who has what in Europe'. Furthermore, gaining access to these biobanks is often difficult. This situation has also led to a lot of duplication of effort, as each biobank has developed its own tools to collect and store the materials and the data that go with them, as well as the bioinformatics software used to analyse these and the legal and ethical framework to govern the uses to which the material is put. This diversity means that integrating these resources will be a tricky task. Another problem faced by biobanks is a lack of funding; most research programmes run for three to five years, although the material they contain has the potential to support researchers for many years. The BBMRI is one of the research infrastructures highlighted by the European Strategy Forum on Research Infrastructures (ESFRI) in its 2006 report. The aim of this preparatory project is to lay the foundations of this infrastructure by addressing the technical, legal, ethical and financial barriers to its creation. The project consortium is immense, comprising 52 participants as well as 150 associated partners from across Europe. Stakeholders, such as patients, funding agencies and clinicians, are also represented via a stakeholder forum. The first challenge for the partners will be to prepare an inventory of existing biobank facilities in Europe. These include population cohorts, groups of patients with specific diseases, twin registries and cohorts from isolated populations. They will then investigate how existing and future biobanks can best be integrated into a single network. This will entail the development of harmonised standards for the collection, storage and analysis of both the biological sample and its associated data. Another arm of the project will focus its efforts on securing long-term funding for the maintenance of the BBMRI. The project partners will look into how national, European and private funds can be mobilised to ensure the sustainability of the infrastructure in the long term. However, the greatest challenge faced by the project partners is the legal and ethical framework surrounding the collection and use of these important samples. The few Member States that have specific legislation on biobanks have arrived at quite different solutions to these questions, and creating procedures which comply with these. The BBMRI will not work in isolation; the partners are working closely with other, related European and international infrastructures to share knowledge and avoid duplication.