Hypothetical and factual willingness to participate in biobank research.

Summary

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.European Journal of Human Genetics advance online publication, 21 July 2010; doi:10.1038/ejhg.2010.106.

Affiliation

Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.

Journal Details

Name: European journal of human genetics : EJHG
ISSN: 1476-5438
Pages:

MESH Definitions

Consent Forms

Documents describing a medical treatment or research project, including proposed procedures, risks, and alternatives, that are to be signed by an individual, or the individual's proxy, to indicate his/her understanding of the document and a willingness to undergo the treatment or to participate in the research.

Clinical Nursing Research

Research carried out by nurses in the clinical setting and designed to provide information that will help improve patient care. Other professional staff may also participate in the research.

Documentaries And Factual Films

Works consisting of films, videos, and programs which depict actual persons or actual events. They do not include frank historical re-creations and do not attempt to judge the truth of the depiction in a film purporting to be factual or documentary in character. (From Moving Image Materials: Genre Terms, 1988)

Self Disclosure

A willingness to reveal information about oneself to others.

Ferricyanides

Inorganic salts of the hypothetical acid, H3Fe(CN)6.

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