Human Biobanks: Selected Examples from and beyond Europe

Human Biobanks: Selected Examples from and beyond Europe

Brigitte Jansen (BioEthicsLaw e.V., Germany & University of Madras, India)
DOI: 10.4018/978-1-61692-883-4.ch013
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Abstract

The chapter presents a careful comparative study on ethical and legal aspects of human biobanks both in Europe and elsewhere. The rapid expansion of human DNA sampling and data collection has taken place in the last few years, but the legal and ethical perception of this situation looks very different in European countries and beyond. The author focuses her attention on the European Union, especially in Estonia, where a population wide gene back has been established; moreover, she also discusses what is happening in Macedonia, a relatively neglected country in Eastern Europe, as well as Australia, India and Israel.
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Introduction

Traditionally, biobanks are defined as a systematic organized collection of cells, tissues or blood samples which are stored to be retrieved for analysis for a more or less long time. This definition includes the idea that universities, researchers etc. have their own working collections which are also increasing in the last time (Cambon-Thomsen et al., 2003, p. 145). Since large population biobanks were set up, this definition is not really broad enough as large population biobanks are a good basis for health surveys, research etc. because this allows monitoring of the health status on a permanent basis.1 So it seems helpful to make a distinction between2:

  • Diagnostic biobanks and treatment biobanks: Collection of human biological material delivered for medical examination, diagnostics and treatment, and

  • Research biobanks: Collection of human biological material and information directly deriving from analyses of this material for research purposes.

The consequence of such working definition could change the understanding of our current biobanks3 in a more practical way. It is obvious that for example for research in biobanks the physical sample itself may become less important, because more tests and analyses can be run automatically with the collection of samples. In particular genomic data could become more important (Mattick, 2003), and we shall concentrate on this aspect. Biobanks are increasingly viewed as an international resource; thus, standardization and collaboration between biobanks will become common practice (Hirtzlin et al., 2003).

The chapter will describe the situation in several countries where the discussion and development of DNA banks is especially advanced. Furthermore, indications will be given as to how the situation is developing, especially in European countries.

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