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.
journal_name
Hum Genetjournal_title
Human geneticsauthors
Gottweis H,Chen H,Starkbaum Jdoi
10.1007/s00439-011-1065-ysubject
Has Abstractpub_date
2011-09-01 00:00:00pages
433-40issue
3eissn
0340-6717issn
1432-1203journal_volume
130pub_type
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