Hypothetical and factual willingness to participate in biobank research

International audience In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. Surveys on willingness to participate in research may not always predict actual participation rates, however. We compared hypothetical willingness as estimated in eleven sur...

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Bibliographic Details
Published in:European Journal of Human Genetics
Main Authors: Johnsson, Linus, Helgesson, Gert, Rafnar, Thorunn, Halldorsdottir, Ingibjorg, Kee-Seng, Chia, Eriksson, Stefan, Hansson, Mats G.
Other Authors: Uppsala University
Format: Article in Journal/Newspaper
Language:English
Published: HAL CCSD 2010
Subjects:
biobanks
tissue banks
dna banks
sample collections
sample repositories
genetic databases
public attitudes
trust
public surveys
Iceland
Online Access:https://hal.archives-ouvertes.fr/hal-00558089
https://hal.archives-ouvertes.fr/hal-00558089/document
https://hal.archives-ouvertes.fr/hal-00558089/file/PEER_stage2_10.1038%252Fejhg.2010.106.pdf
https://doi.org/10.1038/ejhg.2010.106
Description
Summary:International audience In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. Surveys on willingness to participate in research may not always predict actual participation rates, however. We compared hypothetical willingness as estimated in eleven surveys conducted in Sweden, Iceland, UK, Ireland, US, and Singapore to factual participation rates in twelve biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, twelve 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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