title: Hypothetical and factual willingness to participate in biobank research.
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.
authors.affiliation: Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden. linus.johnsson@crb.uu.se
authors.forename: Linus
authors.initials: L
authors.lastname: Johnsson
authors.forename: Gert
authors.initials: G
authors.lastname: Helgesson
authors.forename: Thorunn
authors.initials: T
authors.lastname: Rafnar
authors.forename: Ingibjorg
authors.initials: I
authors.lastname: Halldorsdottir
authors.forename: Kee-Seng
authors.initials: KS
authors.lastname: Chia
authors.forename: Stefan
authors.initials: S
authors.lastname: Eriksson
authors.forename: Mats G
authors.initials: MG
authors.lastname: Hansson
mesh_terms: D001294:Attitude to Health; D003625:Data Collection / Q000379:methods / Q000706:statistics & numerical data*; D036281:Genetic Research / Q000941:ethics; D006801:Humans; D007055:Iceland; D007494:Ireland; D010358:Patient Participation / Q000706:statistics & numerical data; D011639:Public Opinion; D012107:Research Design; D012846:Singapore; D013548:Sweden; D014015:Tissue Banks; D014019:Tissue Donors / Q000941:ethics / Q000706:statistics & numerical data*; D006113:United Kingdom; D014481:United States