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Trading in Cold Blood?

Trustworthiness in Face of Commercialized Biobank Infrastructures
  • Klaus Hoeyer
Conference paper
  • 649 Downloads
Part of the Veröffentlichungen des Instituts für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim book series (IMGB, volume 33)

Abstract

In this chapter I discuss trustworthiness as a quality of biobanks constructed and regulated in ways that make them serve the expectations donors have. Beginning with a short review of empirical studies of donor expectations and attitudes, I show that their concerns tend to revolve around issues of 1) personal control, 2) harmful uses of medical knowledge and 3) social fairness, in particular whether research is shaped by creed rather than medical need. I then rehearse the regulatory tendencies addressing these three issues, and identify an overall trend towards commercialization in particular in the areas of property law and research management. Then, the potential effects of this commercialization on the research agenda and research results are assessed based on available empirical studies. In conclusion, I point to the gap between donor expectations and the thrust of regulatory efforts. I argue that it is important that ethicists begin to address the wider innovation system surrounding biobanks if they wish that biobanks do not only preserve, but also deserve, the trust of the donating public.

Keywords

Research Agenda Embryonic Stem Cell Line European Patent Office Industry Sponsorship hESC Research 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Copyright information

© Springer-Verlag Berlin Heidelberg 2012

Authors and Affiliations

  • Klaus Hoeyer
    • 1
  1. 1.University of CopenhagenCopenhagenDenmark

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