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Page last update: 25/12/2008

Scientists call for biobank identification codes

Biobanks are an invaluable resource for scientists. They contain tens of thousands of samples of human biological material such as blood or tissue, together with data such as clinical information associated with them. Researchers use these to study complex diseases such as cancer, heart disease, arthritis and dementia as well as other conditions. In order to work as effectively as possible, scientists need to be able to easily track down information held in other similar repositories.

One solution would be if all biobanks were given a unique identification code, EU-funded scientists suggest. Writing in the Journal of the American Medical Association (JAMA), they argue that such a scheme would optimise the use of these resources and open up new avenues for genetics studies.

Biobanks are often used in wide-ranging studies designed to identify the genes associated with a particular disease or condition, for example. Ultimately the results of these studies can lead to the development of new treatments. However, these studies require large numbers of samples in order to carry out reliable statistical analyses. Obtaining this critical mass of samples would be easier if researchers could find and access data from other biobanks. The problem is that it is currently very difficult to trace biobanks.

A unique solution

To overcome this problem, the authors propose that each biobank be allocated a unique, structured code, similar to the International Standard Book Number (ISBN), which has been used in the book world for over 40 years. The ISBN is made up of a number of elements identifying the language or geographical region, the publisher and the specific edition of the publication.

A similar system could be applied to biobanks, with the different elements identifying the custodian of the biobank, its home country, and the individual collection. If set up along the same lines as the ISBN system, 'it would be easy to identify a biological collection, the various surveys in a longitudinal study, or an international programme made of collections built up in various countries,' the authors claim.

Biobanks would receive their code at the time of ethical approval, and the system could be applied retroactively to existing studies and collections.

What are the benefits?

The authors are clear about the advantages offered by their system. Firstly, it would permit individuals to trace the uses made of a given biobank and find out the results generated.

By including information on the collector of the samples and data, such a system could also provide recognition of the hard work involved in building up a biobank.

The registration number could also be given to study participants, enabling them to follow the use of the collection and see how their sample and data are being used, even if they are anonymised.

Some questions still remain to be answered, such as who would maintain the system, who would fund it, and how uptake would be ensured.

The EU projects supporting the proposal are: GA2LEN ('Global allergy and asthma European network') and PHOEBE ('Promoting the harmonisation of epidemiological biobanks in Europe'), both of which are financed under the Sixth Framework Programme, and GEN2PHEN ('Genotype to phenotype databases: a holistic solution') and BBMRI ('Biobanking and biomolecular resources research infrastructure'), both of which are funded through the Seventh Framework Programme (FP7).

Source: CORDIS News

For further information:
European Biobanks

Last update: 25 December 2008 | Top