Sharing Orphan Genes

Governing a European-Biobank-Network for the Rare Disease Community
  • Georg Lauss
Conference paper
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)


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.


Rare Disease Muscular Dystrophy Duchenne Muscular Dystrophy Duchenne Muscular Dystrophy Dystrophin Gene 
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

  • Georg Lauss
    • 1
  1. 1.University of ViennaViennaAustria

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