The meaning and purposes of medical research may take on different shapes, which this chapter explores through the case of the European biobanking infrastructure BBMRI-ERIC. This infrastructure resulted from various EU policy initiatives to formalize scientific collaboration in research and the professed need to widely share samples and data in medical research. While EU research policy facilitated the development of BBMRI-ERIC, it also entailed certain design features that complicate collaboration and its European character. This includes continued cross-national differences and a prominent role for the member states. Efforts to standardize biobanking procedures, quality management and facilitating the findability and accessibility of research materials thus run up against such differences and question what the infrastructure is supposed to be. While some see it as a research institution in itself, others perceive it as a support structure. As a result, perspectives on the infrastructure’s (lack of) success differ substantially, also with regard to its value for the European population. What research means in the context of the European infrastructure BBMRI-ERIC thereby turns out to be a complex affair.

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Disputing Medical Research in the European Research Infrastructure BBMRI-ERIC

  • Erik Aarden

摘要

The meaning and purposes of medical research may take on different shapes, which this chapter explores through the case of the European biobanking infrastructure BBMRI-ERIC. This infrastructure resulted from various EU policy initiatives to formalize scientific collaboration in research and the professed need to widely share samples and data in medical research. While EU research policy facilitated the development of BBMRI-ERIC, it also entailed certain design features that complicate collaboration and its European character. This includes continued cross-national differences and a prominent role for the member states. Efforts to standardize biobanking procedures, quality management and facilitating the findability and accessibility of research materials thus run up against such differences and question what the infrastructure is supposed to be. While some see it as a research institution in itself, others perceive it as a support structure. As a result, perspectives on the infrastructure’s (lack of) success differ substantially, also with regard to its value for the European population. What research means in the context of the European infrastructure BBMRI-ERIC thereby turns out to be a complex affair.