Biobanks and Research: Scientific Potential and Regulatory Challenge
The technical possibilities of automated data analysis of DNA samples and their bioinformatic processing have developed rapidly over the last few years and are constantly being improved. A decade after the completion of a draft human genome sequence was a
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Biobanks and Research: Scientific Potential and Regulatory Challenge Bernice S. Elger and Nikola Biller-Andorno
3.1 Biobanks and Research: The Scientific Potential In 2000, the completion of the draft human genome sequence was announced (Butler 2010). During the past 10 years the technical possibilities of automated data analysis of DNA samples and their bioinformatic processing have continuously and dramatically evolved. There has been considerable criticism of the “hype” around the sequencing. This is due to its focus on a race between rivalling scientific institutions and its overemphasis on the relevance of knowing the sequence of the “whole” human genome, fostering a public misunderstanding that “it’s all in the genes”, that simple gene defects could serve as a model for the most common diseases and that quick cures were virtually around the corner. Still, the sequencing of the human genome can be considered a milestone towards what has been termed the “GWAS era” (Latourelle et al. 2009; O’Brien 2009): human biospecimens, DNA, genotype, and clinical data are combined in so-called biobanks to carry out genome wide association studies (GWAS). They explore the interaction between genes and the environment as well as the implications for human diseases and medical therapies. The rising demand for human tissue in research illustrates the rapid expansion of the field (Womack and Gray 2009). In Europe as well as globally, these collections of specimens, also called biobanks or genetic databases,1 represent a significant amount of public investment and have become an important research tool comprising studies in new fields such as epigenetics (Kavikondala et al. 2010; Talens et al. 2010), systems
1 In
this chapter, the terms “biobank” and “genetic database” are used interchangeably to signify a collection of human biological samples that can be used for genetic analysis, including those that combine such samples with the results of genetic analyses and health or other data about the persons from whom the samples were collected. The category encompasses pathology collections, repositories for specific diseases (e.g. cancer registries), and population databases created to permit longitudinal studies of any disease or condition (see Elger et al. 2008, p. 1 note 1).
B.S. Elger (B) Center for Legal Medicine, University of Geneva, Geneva, Switzerland e-mail: [email protected]
C. Lenk et al. (eds.), Biobanks and Tissue Research, The International Library of Ethics, Law and Technology 8, DOI 10.1007/978-94-007-1673-5_3, C Springer Science+Business Media B.V. 2011
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biology (Diez et al. 2010), toxigenomics (Chung et al. 2009) and translational and basic science stem cell research (Bardelli 2010), including research on somatic-cell nuclear transfer (Jones and MacKellar 2009). The European Science Foundation published a report in May 2009 which acknowledges the scientific importance of biobanks. The slogan “good biobanks for better health” (Reed and Bjugn 2010) characterizes the unde
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