Hypothetical and factual willingness to participate in biobank research
| Autor: | Mats G Hansson, Linus Johnsson, Thorunn Rafnar, Kee Seng Chia, Stefan Eriksson, Ingibjorg Halldorsdottir, Gert Helgesson |
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| Jazyk: | angličtina |
| Rok vydání: | 2010 |
| Předmět: |
Research design
Genetic Research Medicin och hälsovetenskap tissue banks media_common.quotation_subject Iceland Short Report Context (language use) Tissue Banks Public opinion Altruism Medical and Health Sciences Health care Genetics Humans genetic databases Patient participation Genetics (clinical) media_common Sweden Singapore business.industry Data Collection trust Bioethics Biobank public surveys Tissue Donors United Kingdom United States public attitudes Research Design Public Opinion biobanks Patient Participation business Psychology Attitude to Health Ireland Social psychology |
| Popis: | 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. Autonomy and trust in biobank research |
| Databáze: | OpenAIRE |
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