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首页> 美国卫生研究院文献>Genomics Society and Policy >Questioning the rhetoric of a ‘willing population’ in Finnish biobanking
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Questioning the rhetoric of a ‘willing population’ in Finnish biobanking

机译：质疑芬兰生物银行中自愿人口的说法

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According to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks, underlining the potential Finland offers for the international biomedical enterprise. In this paper, we critically analyse the use of notions such as ‘willing population’ and ‘engaged people’ in the promotion and legitimation of biobanking. First, there is a seeming contradiction between positive attitudes and actual participation rates, as biobanks have faced unexpected challenges in participant recruitment during the first years of their operations. As a result, the concept of a willing population was redirected to problematise the necessity of informed consent. Second, we question whether it is even meaningful to assume the existence of an informed and engaged population with regard to biobanking. Therefore, we suggest that it is problematic to talk about a willing population at the same time as the relevance of the informed consent system is being questioned by biobank actors and policy makers. We analyse this tension in relation to existing data on Finnish people’s attitudes, pointing out that positive, supportive views do not directly transform into high participation rates; nor do they justify the claims of policy makers and biobank proponents that people are willing to participate, when in fact surveys report that people know very little about biobanks.
机译：根据调查和民意调查，北欧福利协会的公民对医学研究和生物银行拥有积极，支持的态度。在芬兰，预计这将使患者和公民积极参与生物库活动。的确，公共支持已被夸夸其谈地用作促进芬兰生物库发展的独特社会因素和优势，突显了芬兰为国际生物医学企业提供的潜力。在本文中，我们批判性地分析了诸如“愿意的人口”和“敬业的人民”等概念在生物银行的促进和合法化中的使用。首先，积极态度与实际参与率之间似乎存在矛盾，因为生物库在其运营的头几年中在招募参与者方面面临着意想不到的挑战。结果，自愿人群的概念被重新引入，以使知情同意的必要性出现问题。第二，我们质疑假设存在一个知识渊博的，从事生物银行工作的人口是否有意义。因此，我们建议，在同时讨论意愿人群的问题上，因为生物银行参与者和政策制定者正在质疑知情同意系统的相关性。我们根据有关芬兰人民态度的现有数据分析了这种紧张关系，并指出积极的，支持性的观点并不能直接转化为高参与率；他们也没有为人们愿意参与的决策者和生物银行支持者的主张辩护，而事实上，调查报告显示人们对生物银行知之甚少。

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