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Comparative and Functional Genomics
Volume 4 (2003), Issue 6, Pages 628-634
http://dx.doi.org/10.1002/cfg.333
Conference review

Biobanks for Genomics and Genomics for Biobanks

1Inserm U 558, Epidémiologie et Analyses en Santé Publique: Risques, Maladies Chroniques et Handicaps, Faculté de Médecine, 37 Allées Jules Guesde, Toulouse cedex F-31073, France
2FRE2674 Centre Interdisciplinaire de Recherches Urbaines et Sociologiques (CIRUS), Université Toulouse le Mirail (Toulouse II), Maison de la Recherche, 5 Allée Antonio Machado, Toulouse cedex 1 31058, France
3UMR5044 Centre d'Étude et de Recherche Techniques, Organizations, Pouvoirs (CERTOP), Université Toulouse le Mirail (Toulouse II), Maison de la Recherche, 5 Allée Antonio Machado, Toulouse cedex 1 31058, France

Received 21 August 2003; Revised 25 August 2003; Accepted 10 September 2003

Copyright © 2003 Hindawi Publishing Corporation. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Biobanks include biological samples and attached databases. Human biobanks occur in research, technological development and medical activities. Population genomics is highly dependent on the availability of large biobanks. Ethical issues must be considered: protecting the rights of those people whose samples or data are in biobanks (information, autonomy, confidentiality, protection of private life), assuring the non-commercial use of human body elements and the optimal use of samples and data. They balance other issues, such as protecting the rights of researchers and companies, allowing long-term use of biobanks while detailed information on future uses is not available. At the level of populations, the traditional form of informed consent is challenged. Other dimensions relate to the rights of a group as such, in addition to individual rights. Conditions of return of results and/or benefit to a population need to be defined. With ‘large-scale biobanking’ a marked trend in genomics, new societal dimensions appear, regarding communication, debate, regulation, societal control and valorization of such large biobanks. Exploring how genomics can help health sector biobanks to become more rationally constituted and exploited is an interesting perspective. For example, evaluating how genomic approaches can help in optimizing haematopoietic stem cell donor registries using new markers and high-throughput techniques to increase immunogenetic variability in such registries is a challenge currently being addressed. Ethical issues in such contexts are important, as not only individual decisions or projects are concerned, but also national policies in the international arena and organization of democratic debate about science, medicine and society.