Assessing the impact of biobanks (original) (raw)

Nature Genetics volume 34, pages 25–26 (2003) Cite this article

Human biobanks are essential to genomics research1. Although large population collections (for example, the ones in Iceland, Estonia, Latvia, Sweden and the UK; refs. 2–4 and Nat. Genet. 33, 325, 2003) have attracted the most attention, a recent European survey of 147 research institutions5 shows that these are only part of the picture. Collections of human biological samples have been gathered over years by medical doctors and researchers, often as a side activity without a designated budget. These individuals usually manage their resources within their institutions and control who has access to it.

As biobanking activity increases, there is a trend to officially recognize and fund this activity and a need to establish formal guidelines not only for how biobanks should be maintained but also for assessing their value (see http://www1.oecd.org/publications/e-book/9301041E.pdf). Several meetings and workshops in the past two years have taken steps to establish standards for the quality of collections and the management of ethical issues, including consent procedures and protection of personal data (refs. 6–9 and see http://www.eshg.org/Banking%20back-ground%20consult.pdf). New ethical frameworks are even being proposed10. An issue that still needs to be addressed is how to allow broad and free access to the samples contained in biobanks and, at the same time, protect the rights of researchers or institutions that developed the collection and allow long-term recognition of their contributions5,11. When a collection becomes available to new users, there is fear that the effort to establish and maintain the collection will no longer be recognized. Part of the problem is that currently there is no standardized way to quantify the degree to which a biobank is used and to link its use to the impact of the scientific discoveries that arise from it.

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  1. Centre National de la Recherche Scientifique, Institut National de la Santé et de la Recherche Médicale, Inserm U 558, Epidémiologie et analyses en santé publique: risques, maladies chroniques et handicaps, Faculté de médecine, 37 allées Jules Guesde, Toulouse, F-31073, Cedex, France
    Anne Cambon-Thomsen

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  1. Anne Cambon-Thomsen

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Cambon-Thomsen, A. Assessing the impact of biobanks.Nat Genet 34, 25–26 (2003). https://doi.org/10.1038/ng0503-25b

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