Abstract
The great interest in biobanks, the related, substantial investments, and the expectations connected with them raises the question of how to explain the relative successes and failures of contemporary biobank projects. In this article we will present and discuss areas that need ongoing attention by many stakeholders in order stabilize and utilize biobanks and biobank networks in the future. Our aim is to present and utilize an analytical model for comparing structures of biobank governance. The governance model we deduce from empirical case studies is not a well-ordered, almost bureaucratic type of government. The patchwork character and the interrelatedness of heterogeneous activities that constitute biobank governance in its multiple dimensions will be highlighted. Biobank governance should therefore be understood as strategy for patterning a network of interaction that unfolds within and across a number of different fields including a variety of activities that go beyond regulatory activities: the scientific/technological field, the medical/health field, the industrial–economic field, the legal–ethical, and the sociopolitical field. Our account emphasizes that biobanks are not technical visions that operate vis-à-vis an external society. The article discusses attempts to develop participatory governance structures. It concludes that facilitating and managing the integration of a network of more or less interrelated actors, in many nonhierarchic ways, should not be equated with democratization per se, but can nevertheless be regarded as an important step towards a more pluralistic and inclusive style of policy making.
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Notes
The entrepreneurial biobank model does, however, obviously still exist. One example is the German company Indivumed, which as of this writing seems to remain successful. See www.indivumed.com.
The UK Biobank is jointly funded by the public health care system (National Health Service) and by a research charity (the Wellcome Trust), neither of which are oriented towards private commercialization.
This could for example happen in the wake of scandals in which biobank staff would pass on samples and information for unintended purposes.
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Acknowledgments
The research for this article was conducted in the context of the projects “PRIVATGen” (Privacy Regimes Investigated: Variations, Adaptations and Transformations in an age of (Post-) Genomics) and GATiB II (Genome Austria Tissue Bank), which are both supported by the Austrian Genome Research Programme (GEN-AU). The authors would like to thank the funding agencies that made this research possible. In addition the authors would like to thank the members of the LSG for the stimulating research environment they provided and their useful comments.
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Special Issue: Genetics and Democracy
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Gottweis, H., Lauss, G. Biobank governance: heterogeneous modes of ordering and democratization. J Community Genet 3, 61–72 (2012). https://doi.org/10.1007/s12687-011-0070-0
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DOI: https://doi.org/10.1007/s12687-011-0070-0