Hypothetical and factual willingness to participate in biobank research
Language: 
English
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.

Author(s): 
Johnsson, Linus
Helgesson, Gert
Rafnar, Thorunn
Halldorsdottir, Ingibjorg
Chia, Kee-Seng
Eriksson, Stefan
Hansson, Mats G.
Item Type: 
Journal Article
Publication Title: 
European journal of human genetics: EJHG
Journal Abbreviation: 
Eur. J. Hum. Genet.
Publication Date: 
2010-11
Publication Year: 
2010
Pages: 
1261-1264
Volume: 
18
Issue: 
11
ISSN: 
1476-5438
DOI: 
10.1038/ejhg.2010.106
Library Catalog: 
PubMed
Extra: 
PMID: 20648060 PMCID: PMC2987483

Turabian/Chicago Citation

Linus Johnsson, Gert Helgesson, Thorunn Rafnar, Ingibjorg Halldorsdottir, Kee-Seng Chia, Stefan Eriksson and Mats G. Hansson. 2010-11. "Hypothetical and factual willingness to participate in biobank research." European journal of human genetics: EJHG 18: 11: 1261-1264. 10.1038/ejhg.2010.106.

Wikipedia Citation

<ref> {{Cite journal | doi = 10.1038/ejhg.2010.106 | issn = 1476-5438 | volume = 18 | pages = 1261-1264 | last = Johnsson | first = Linus | coauthors = Helgesson, Gert, Rafnar, Thorunn, Halldorsdottir, Ingibjorg, Chia, Kee-Seng, Eriksson, Stefan, Hansson, Mats G. | title = Hypothetical and factual willingness to participate in biobank research | journal = European journal of human genetics: EJHG | date = 2010-11 | pmid = | pmc = }} </ref>