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跨领域知情同意模型设计工具包研究:系统综述

Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review.

机构信息

Department of Philosophy and Ethics, School of Innovation Sciences, Eindhoven University of Technology, PO Box 513, 5600 MB, Eindhoven, The Netherlands.

出版信息

Sci Eng Ethics. 2022 Aug 30;28(5):42. doi: 10.1007/s11948-022-00398-x.

Abstract

In the 60+ years that the modern concept of informed consent has been around, researchers in various fields of practice, especially medical ethics, have developed new models to overcome theoretical and practical problems. While (systematic) literature reviews of such models exist within given fields (e.g., genetic screening), this article breaks ground by analyzing academic literature on consent models across fields. Three electronic research databases (Scopus, Google Scholar, and Web of Science) were searched for publications mentioning informed consent models. The titles, abstracts, and if applicable, full publications were screened and coded. The resulting data on fields, models, and themes were then analyzed. We scanned 300 sources from three databases to find 207 uniquely named consent models, and created a network visualization displaying which models occur primarily in one field, and which models overlap between fields. This analysis identifies trends in the consent debate in different fields, as well as common goals of consent models. The most frequently occurring consent models are identified and defined. The analysis contributes toward a cross-disciplinary "consent design toolkit" and highlights that there are more interrelationships between models and fields than are acknowledged in the literature. Where some models are designed to solve distinctively field-specific issues and are specific to biomedical ethics, some may be adaptable and applicable for other fields including engineering and design.

摘要

在现代知情同意概念出现的 60 多年里,各个实践领域的研究人员,特别是医学伦理领域的研究人员,已经开发出了新的模型来克服理论和实践上的问题。虽然在特定领域(如遗传筛查)存在针对这些模型的(系统)文献综述,但本文通过分析跨领域的同意模型学术文献,开拓了新的研究领域。我们在三个电子研究数据库(Scopus、Google Scholar 和 Web of Science)中搜索了提到知情同意模型的出版物。筛选标题、摘要,如果适用,还筛选全文。然后对所得数据进行领域、模型和主题分析。我们从三个数据库中扫描了 300 个来源,找到了 207 个唯一命名的同意模型,并创建了一个网络可视化图,显示了哪些模型主要出现在一个领域,哪些模型在多个领域中重叠。这种分析确定了不同领域中同意辩论的趋势,以及同意模型的共同目标。确定并定义了最常出现的同意模型。该分析有助于建立跨学科的“同意设计工具包”,并强调模型和领域之间的相互关系比文献中所承认的要多。一些模型旨在解决特定领域的独特问题,并且仅限于生物医学伦理,而另一些模型可能具有适应性和可用于包括工程和设计在内的其他领域。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/81c1/9427926/1f9125e9fa66/11948_2022_398_Fig1_HTML.jpg

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