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.
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Acknowledgements
This study was conducted as part of the AutoCure and CCPRB projects of the EU Sixth Framework Programme. The authors of this study have been independent from the funders in both conception and execution of the study.
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LJ, GH, SE, and MGH designed the study. LJ, TR, IH, and CKS collected the data. LJ analyzed the data and wrote the paper. All authors contributed to revision of critical intellectual content and approved the publication of the final version of this article.
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Johnsson, L., Helgesson, G., Rafnar, T. et al. Hypothetical and factual willingness to participate in biobank research. Eur J Hum Genet 18, 1261–1264 (2010). https://doi.org/10.1038/ejhg.2010.106
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DOI: https://doi.org/10.1038/ejhg.2010.106
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