Hoeyer K
University of Copenhagen, Department of Public Health, Copenhagen, Denmark.
Public Health Genomics. 2010;13(6):345-52. doi: 10.1159/000262329. Epub 2009 Nov 26.
Many studies have explored public perspectives on when and how to provide informed consent to biobank research and when to get feedback on research results. Little has been done to explore overarching trends in these studies.
The article is based on a critical reading of the literature found through Medline searches and the PRIVILEGED project compilation of empirical studies.
I suggest that tissue type, procurement situation including who is asked to provide consent, and the biobank's geographical, social and historical context influence how various potential donors view the issues of consent, re-consent, and feedback of research results. In light of this, universal ethical standards for informed consent to and feedback of research results from biobank research seem to run contrary to the diversity of perceptions and expectations among different donors.
To respect donor interests, it is necessary to pay more attention to diversity with regard to biobank types and different contexts for donation. We should avoid assuming that words like 'biobank' and 'donor' can be used in a generic sense - always referring to the same - if we wish to respect and care for the diverse group of individuals who comprise the donating public.
许多研究探讨了公众对于何时以及如何为生物样本库研究提供知情同意，以及何时获得研究结果反馈的看法。但在探究这些研究中的总体趋势方面做得很少。
本文基于对通过医学文献数据库检索找到的文献以及PRIVILEGED项目实证研究汇编的批判性阅读。
我认为组织类型、采集情况（包括被要求提供同意的对象）以及生物样本库的地理、社会和历史背景会影响不同潜在捐赠者对同意、再次同意和研究结果反馈问题的看法。鉴于此，生物样本库研究知情同意和研究结果反馈的通用伦理标准似乎与不同捐赠者的认知和期望的多样性相悖。
为了尊重捐赠者的利益，有必要更多地关注生物样本库类型和不同捐赠背景的多样性。如果我们希望尊重和关心构成捐赠群体的不同个体，就应避免假定“生物样本库”和“捐赠者”等词汇可以一概而论——总是指代相同的事物。
