Hypothetical and factual willingness to participate in biobank research
Open accessAbstract
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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Johnsson et al. concluded that motivational factors, such as altruism, trust, and sense of duty, may be less influential in hypothetical contexts, and thus the value of such scenarios in predicting factual willingness to participate may be limited.
“The authors concluded that motivational factors, such as altruism, trust, and sense of duty, may be less influential in hypothetical contexts, and thus the value of such scenarios in predicting factual willingness to participate may be limited.”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [73]
Johnsson et al. compared hypothetical to factual willingness to participate in biobank research in studies matched by country and time frame; among 22 pairwise comparisons, 12 suggested that factual willingness was greater than hypothetical, 6 indicated the reverse, and 4 were inconclusive.
“For example, Johnsson et al. (73) compared hypothetical to factual willingness to participate in biobank research in studies matched by country and time frame. Among 22 pairwise comparisons, 12 suggested that factual willingness was greater than hypothetical, 6 indicated the reverse, and 4 were inconclusive.”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [73]
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- Authors
- Johnsson, L., Helgesson, G., Rafnar, T., Halldorsdottir, I., Chia, K.-S., Eriksson, S., & Hansson, M. G.
- Affiliations
- Uppsala University (SE)
- Karolinska Institutet (SE)
- University of Iceland (IS)
- National University of Singapore (SG)
- Corresponding author
- Johnsson, Linus
- Venue
- European Journal of Human Genetics
- Published
- 2010-07-21
- Volume
- 18
- Issue
- 11
- Pages
- 1261-1264
- ISSN
- 1018-4813 (ISSN-L)
- 1476-5438
- PMC
- PMC2987483
- OpenAlex
- W2026193853
- Cited by
- 98
- References
- 0
- Citations by year
- 2026: 2 · 2025: 2 · 2023: 9 · 2022: 7 · 2021: 6 · 2020: 10 · 2019: 6 · 2018: 11 · 2017: 2 · 2016: 7 · 2015: 9 · 2014: 11 · 2013: 4 · 2012: 5
- FWCI
- 5.09
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.springer.com/tdm (tdm)
- Locations
- European Journal of Human Genetics (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- National University of Singapore (submittedVersion)
- KTH Publication Database DiVA (KTH Royal Institute of Technology) (submittedVersion, other-oa)
- HAL (submittedVersion, other-oa)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Trinity's Access to Research Output (TARA) (Trinity College Dublin) (submittedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
- Keywords
- biobanks, willingness to participate, biobank regulation, public attitudes, research participation rates, altruism, trust, sense of duty
- MeSH terms
- Attitude to Health, Data Collection, United Kingdom, Humans, Iceland, Ireland, Patient Participation, Public Opinion, Research Design, Singapore, Sweden, Tissue Banks, Tissue Donors, United States, Genetic Research
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