质疑芬兰生物银行“自愿人口”的说辞。

IF 3.1 Q1 Arts and Humanities
Karoliina Snell, Heta Tarkkala
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引用次数: 20

摘要

根据调查和民意测验,北欧福利社会的公民对医学研究和生物银行持积极和支持的态度。在芬兰,预计这将导致患者和公民积极参与生物银行。事实上,公众的支持在宣传芬兰生物银行时被用作一种独特的社会因素和优势,强调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“自愿人口”和“参与人员”等概念在促进和合法化生物银行中的使用。首先,积极的态度和实际的参与率之间似乎存在矛盾,因为生物银行在运营的头几年里在招募参与者方面面临着意想不到的挑战。结果,“有意愿的人口”的概念被重新导向对知情同意的必要性提出质疑。其次,我们质疑是否有必要假设存在一个知情和参与生物银行的人群。因此,我们认为,在生物银行行为者和政策制定者质疑知情同意制度的相关性的同时,谈论有意愿的人群是有问题的。我们分析了这种紧张关系与芬兰人民态度的现有数据,指出积极,支持的观点不会直接转化为高参与率;它们也不能证明政策制定者和生物银行支持者声称人们愿意参与的说法是正确的,而事实上,调查报告显示人们对生物银行知之甚少。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Questioning the rhetoric of a 'willing population' in Finnish biobanking.

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.

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来源期刊
Life Sciences, Society and Policy
Life Sciences, Society and Policy Arts and Humanities-Philosophy
自引率
0.00%
发文量
0
审稿时长
18 weeks
期刊介绍: The purpose of Life Sciences, Society and Policy (LSSP) is to analyse social, ethical and legal dimensions of the most dynamic branches of life sciences and technologies, and to discuss ways to foster responsible innovation, sustainable development and user-driven social policies. LSSP provides an academic forum for engaged scholarship at the intersection of life sciences, philosophy, bioethics, science studies and policy research, and covers a broad area of inquiry both in emerging research areas such as genomics, bioinformatics, biophysics, molecular engineering, nanotechnology and synthetic biology, and in more applied fields such as translational medicine, food science, environmental science, climate studies, research on animals, sustainability, science education and others. The goal is to produce insights, tools and recommendations that are relevant not only for academic researchers and teachers, but also for civil society, policy makers and industry, as well as for professionals in education, health care and the media, thus contributing to better research practices, better policies, and a more sustainable global society.
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