A Trust-Based Pact in Research Biobanks. From Theory to Practice
A Trust-Based Pact in Research Biobanks. From Theory to Practice
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DOI：
10.1111/bioe.12184
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发表时间：
2016-05-01
期刊：
影响因子：
2.2
通讯作者：
Boniolo, Giovanni
中科院分区：
文献类型：
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作者：
Sanchini, Virginia;Bonizzi, Giuseppina;Boniolo, Giovanni
传统的知情同意越来越不充分，特别是在研究生物库的背景下。患者需要多少信息才能真正知情同意？他们收到的信息质量如何与他们应该收到的信息质量相匹配？如何公平地传达关于未来不可预测的研究方向的信息？为了规避这些困难，一些学者提出，目前的同意准则应重新评估，与信任作为指导原则，而不是信息。在这里，我们分析了这些建议之一，参与协议的基础上，这是已经提供给病人在欧洲肿瘤研究所，在米兰，意大利的综合性癌症医院。
Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ought to receive? How can information be conveyed fairly about future, non-predictable lines of research? To circumvent these difficulties, some scholars have proposed that current consent guidelines should be reassessed, with trust being used as a guiding principle instead of information. Here, we analyse one of these proposals, based on a Participation Pact, which is already being offered to patients at the Istituto Europeo di Oncologia, a comprehensive cancer hospital in Milan, Italy.