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Patients’ and Citizens’ Points of View

机译:患者和公民的观点

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摘要

In this article, the first section introduces general considerations on the opinions of patients and the public regarding biobanks. The notion of ‘‘public opinion’’ is briefly described and discussed in a historical perspective. The second section illustrates the results of some surveys carried out in the United States and Europe regarding biobanks. Finally, patients’ and citizens’ opinions on the storage and use of biological samples are discussed within an ethical framework of principles and values. Four main aspects are discussed: willingness to participate in research; preferences and the perception of norms; language; and opportunities and limits of deliberative democracy in political decisions about biobanking.
机译:在本文中,第一部分介绍了有关患者和公众对生物库的看法的一般考虑。从历史的角度简要地描述和讨论了“民意”的概念。第二部分说明了在美国和欧洲进行的有关生物库的一些调查的结果。最后,在原则和价值的道德框架内讨论了患者和公民对生物样品的存储和使用的意见。讨论了四个主要方面:参与研究的意愿;偏好和对规范的理解;语言;生物银行政治决策中协商民主的机会和局限性。

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