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首页> 外文期刊>Science and engineering ethics >'Mirroring' the Ethics of Biobanking: What Analysis of Consent Documents Can Tell Us?
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'Mirroring' the Ethics of Biobanking: What Analysis of Consent Documents Can Tell Us?

机译：“镜像”生物银行的道德：同意文件的哪些分析可以告诉我们？

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Biobanks have been recognized as a key research infrastructure and how to approach ethical questions has been a topic of discussion for at least a decade by now. This article explores the characteristics of donors' participation in European biobanks as reflected in the consent documents of a selection of different biobanks from various European countries. The primary aim of this study is to understand how donors are informed about their participation in biobanking. Also the paper discusses what the most important thematic issues of information are to be given to the biobank participants and how this information should be presented in the consent documents. For these purposes, we analyse consent documents from 14 biobanks in 11 countries for six ethically relevant issues: (1) model of consent, (2) scope of future research, (3) access to medical data, (4) feedback to the participants, (5) consent withdrawal, and (6) role of research ethics committee. In order to compare different trends of informing donors of human biological material and medical data, we interpret the six analysed issues in the context of respect to donor's autonomy paradigm. Although the results of the paper reflect the heterogeneity of biobank consent document policies applied in different European countries, we uncovered some trends and suggested several examples of good practices to balance the interests of the donors with those of the researchers and future patients.
机译：生物库已经被认为是关键的研究基础设施，并且至少到现在为止，如何处理道德问题一直是人们讨论的话题。本文探讨了捐赠者参与欧洲生物银行的特征，这些特征反映在来自欧洲各个国家的一系列不同生物银行的同意文件中。这项研究的主要目的是了解捐助者如何得知他们参与生物银行。本文还讨论了应向生物库参与者提供最重要的信息主题问题以及应如何在同意文件中提供此信息。为此，我们分析了来自11个国家/地区的14个生物库的同意文件，涉及六个与道德相关的问题：（1）同意模型，（2）未来研究的范围，（3）访问医疗数据，（4）向参与者的反馈，（5）撤回同意以及（6）研究伦理委员会的作用。为了比较向捐赠者提供人类生物材料和医学数据的不同趋势，我们在尊重捐赠者自治范式的背景下解释了六个分析问题。尽管论文的结果反映出生物银行同意文件政策在欧洲不同国家所应用的异质性，但我们发现了一些趋势，并提出了一些良好实践的实例，以平衡供体与研究人员和未来患者的利益。

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