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.

Figure 1

Willingness to participate in biobank research. In 12 of 22 pairwise comparisons, factual willingness to participate in biobank research was higher than estimated in the corresponding surveys. Six comparisons yielded the opposite result. In two of these (IE and US2), the biobank studies recruited participants by asking them to supply buccal swabs by mail. In three others (GB4, GB5, and GB6) the first stage of recruitment to the biobank study in question (UK Biobank) relied on potential subjects to respond to a mailed invitation, which could explain part of the dropout. Significant differences (P<0.05) are marked by an asterisk. Each comparison has an index that identifies the study country (SE=Sweden, IS=Iceland, GB=Great Britain, IE=Ireland, US=United States, SG=Singapore). For details on the studies in each pair, see Table 1.