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The case of biobank with the law: between a legal and scientific fiction
  1. Judit Sándor1,
  2. Petra Bárd2,
  3. Claudio Tamburrini2,
  4. Torbjörn Tännsjö3
  1. 1Center for Ethics and Law in Biomedicine, Central European University Budapest, Budapest, Hungary
  2. 2Centre for Healthcare Ethics, Stockholm University, Stockholm, Sweden
  3. 3Department of Philosophy, Stockholm University, Stockholm, Sweden
  1. Correspondence to Professor Judit Sándor, Central European University, Nádor u 9, Budapest 1051, Hungary; sandorj{at}ceu.hu

Abstract

According to estimates more than 400 biobanks currently operate across Europe. The term ‘biobank’ indicates a specific field of genetic study that has quietly developed without any significant critical reflection across European societies. Although scientists now routinely use this phrase, the wider public is still confused when the word ‘bank’ is being connected with the collection of their biological samples. There is a striking lack of knowledge of this field. In the recent Eurobarometer survey it was demonstrated that even in 2010 two-thirds of the respondents had never even heard about biobanks. The term gives the impression that a systematic collection of biological samples can constitute a ‘bank’ of considerable financial worth, where the biological samples, which are insignificant in isolation but are valuable as a collection, can be preserved, analysed and put to ‘profitable use’. By studying the practices of the numerous already existing biobanks, the authors address the following questions: to what extent does the term ‘biobank’ reflect the normative concept of using biological samples for the purposes of biomedical research? Furthermore, is it in harmony with the so far agreed legal–ethical consensus in Europe or does it deliberately pull science to the territory of a new, ambiguous commercial field? In other words, do biobanks constitute a medico-legal fiction or are they substantively different from other biomedical research protocols on human tissues?

  • Biobanks
  • commercialisation
  • donation/procurement of organs/tissues
  • genome mapping
  • human genetics
  • informed consent
  • law
  • Oviedo Convention
  • research on special populations

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Footnotes

  • Funding The publication is based on the research within the Tiss.Eu Project funded by the European Commission as part of the 7th Framework Programs.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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