Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
Eur J Hum Genet. 2010 Nov;18(11):1261-4. doi: 10.1038/ejhg.2010.106. Epub 2010 Jul 21.
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.
在关于生物银行监管的争论中，论点往往是基于公众态度调查的发现。然而，参与研究的意愿调查并不总是能预测实际的参与率。我们将在瑞典、冰岛、英国、爱尔兰、美国和新加坡进行的 11 项调查中估计的假设意愿与 12 项生物银行研究的实际参与率进行了比较。研究是通过国家和大致时间框架来匹配的。在 22 对比较中，有 12 项表明实际参与生物银行研究的意愿大于假设，6 项表明相反的关系，4 项则不确定。实际的捐赠者，特别是在医疗保健或其他面对面与研究人员接触的情况下，可能是由在假设情况下影响较小的因素所驱动的，例如利他主义、信任和责任感。因此，调查在评估实际意愿方面的价值可能是有限的。
