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Sharing Orphan Genes

Governing a European-Biobank-Network for the Rare Disease Community

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Trust in Biobanking

Abstract

The majority of current discussions concerning governance challenges in biobanking conceptualize biobanks as technical tools that have to be embedded in a social environment without infringing donors’ personal integrity and privacy. This article reconstructs the course of events that induced a European biobanknetwork operating in the area of rare-disease research: EuroBioBank. Its main focus is on the analysis of social and political complexity involved in the creation of a putatively value-neutral research facility. This case study discusses the governance regime that was adopted to facilitate the intra-European exchange of high quality biological material and its peculiarity in institutionalizing the involvement of organized patient interests. In this model, the participation of organizations of civil society was not regarded as an obstacle, but on the contrary as a valuable resource for effective and democratic governance.

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Author information

Authors and Affiliations

  1. University of Vienna, Vienna, Austria

    Georg Lauss M.A.

Authors
  1. Georg Lauss M.A.
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Editors and Affiliations

  1. Erlangen-Nuremberg, Chair for Systematic Theology / Ethics, Friedrich-Alexander University, Kochstraße 6, Erlangen, 91056, Germany

    Peter Dabrock

  2. , Institute for Medical and Health Law, University of Mannheim, Schloss, Westflügel, Mannheim, 68131, Germany

    Jochen Taupitz

  3. Erlangen-Nuremberg, Chair for Systematic Theology / Ethics, Friedrich-Alexander-University, Kochstraße 6, Erlangen, 91056, Germany

    Jens Ried

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© 2012 Springer-Verlag Berlin Heidelberg

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Lauss, G. (2012). Sharing Orphan Genes. In: Dabrock, P., Taupitz, J., Ried, J. (eds) Trust in Biobanking. Veröffentlichungen des Instituts für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim, vol 33. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-540-78845-4_14

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