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Biobanks and the phantom public

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Abstract

This paper surveys the current state of knowledge about the relationship between different national publics and biobanks, how different publics perceive biobanks, and which issues are identified as important by various stakeholders. We discuss existing studies and emerging governance strategies dealing with the biobank–publics interface and argue that the search for phantom (biobank) public(s) is on, but still much needs to be done. We argue that the existing data originate in a relatively few regions, among them Northern Europe, the United Kingdom, and in certain U.S. states and are often based on survey research with small samples and short questionnaires. Combined usage of qualitative and quantitative methodology in studies is still rare though of great importance in order to investigate distributions of public opinion and also to be able to explain these patterns. Many important questions in the relationship between publics and biobanks are unexplored, or the existing data are inconsistent.

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Acknowledgment

Herbert Gottweis’s work was supported by the National Research Foundation of Korea Grant funded by the Korean Government (NRF-2010-330-B00169)", by grants of the Austrian Genome Project (GEN-AU) for the projects GATiB (Genome Austrian Tissue Bank) and PrivatGen, and by the European Union Programme for Research and Development (FP 7) project BBMRI". Haidan Chen’s work was supported by the grants from the Humanities and Social Sciences Research Programs of the Ministry of Education, PR.C (505000-A91101) and the Program of Postdoctors in China (205000-X91002).

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Authors and Affiliations

  1. University of Vienna, Vienna, Austria

    Herbert Gottweis & Johannes Starkbaum

  2. Kyung Hee University, Seoul, Korea

    Herbert Gottweis

  3. Center for the Study of Language and Cognition, Zhejiang University, Hangzhou, China

    Haidan Chen

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  1. Herbert Gottweis
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  2. Haidan Chen
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  3. Johannes Starkbaum
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Correspondence to Herbert Gottweis.

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Gottweis, H., Chen, H. & Starkbaum, J. Biobanks and the phantom public. Hum Genet 130, 433–440 (2011). https://doi.org/10.1007/s00439-011-1065-y

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