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Title: Hypothetical and factual willingness to participate in biobank research
Authors: Johnsson, L.
Helgesson, G.
Rafnar, T.
Halldorsdottir, I.
Chia, K.-S. 
Eriksson, S.
Hansson, M.G.
Keywords: biobanks
genetic databases
public attitudes
public surveys
tissue banks
Issue Date: Nov-2010
Citation: Johnsson, L., Helgesson, G., Rafnar, T., Halldorsdottir, I., Chia, K.-S., Eriksson, S., Hansson, M.G. (2010-11). Hypothetical and factual willingness to participate in biobank research. European Journal of Human Genetics 18 (11) : 1261-1264. ScholarBank@NUS Repository.
Abstract: In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited. © 2010 Macmillan Publishers Limited All rights reserved.
Source Title: European Journal of Human Genetics
ISSN: 10184813
DOI: 10.1038/ejhg.2010.106
Appears in Collections:Staff Publications

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