María C Sánchez, Juan Carlos Hernández Clemente, Fernando J García López
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引用次数: 0
摘要
我们旨在审查公众和患者对共享数据和生物样本进行研究的态度和观点，并确定共同的维度，无论环境如何。我们的综述包括从Medline（PubMed界面）、Web of Science、Scopus、ProQuest和Cochrane reviews检索的实证研究的系统、范围或主题综述。在14次审查中确定和综合的主要主题是准备情况和动机；潜在风险和保障措施；信任、透明度和问责制；自主权和首选的同意类型；以及影响数据和生物样本共享和同意的因素。社会地理因素、研究和个人背景在所有环境中仍然是相关的影响因素，而对同意类型的偏好是高度异质的。可信的环境和适应参与者参与的同意选项与提高研究参与度相关。
Public and Patients' Perspectives Towards Data and Sample Sharing for Research: An Overview of Empirical Findings.
We aimed to review the attitudes and perspectives of the public and patients towards the sharing of data and biospecimens for research and to identify common dimensions, regardless of setting. Our review included systematic, scoping or thematic reviews of empirical studies retrieved from Medline (PubMed interface), Web of Science, Scopus, ProQuest and Cochrane Reviews. The main themes identified and synthesised across the 14 reviews were readiness and motivations; potential risks and safeguards; trust, transparency and accountability; autonomy and preferred type of consent; and factors influencing data and biospecimen sharing and consent. Sociodemographic factors and research and individual context remain relevant influencing factors in all settings, while preferences for types of consent are highly heterogeneous. Trusted environments and adapted consent options with participant engagement are relevant to improve research participation.
期刊介绍：
The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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