Snell K, Starkbaum J, Lauß G, Vermeer A, Helén I
Department of Social Research, University of Helsinki, Helsinki, Finland.
Public Health Genomics. 2012;15(5):293-302. doi: 10.1159/000336541. Epub 2012 Jun 20.
Most people in Europe do not know what biobanks are. In this study, public perceptions of biobanks and collection of genetic and health data were analyzed in relation to other technologies and digital networks where personal information is compiled and distributed. In this setting, people contextualized biobanks in line with their daily experiences with other technologies and data streams. The analysis was based on 18 focus group discussions conducted in Austria, Finland and Germany. We examined the ways in which people frame and talk about problems and benefits of information distribution in digital networks and biobanks. People identify many challenges associated with collection of personal data in the information society. The study showed that instead of privacy - which has been the key term of bioethical debates on biobanks - the notions of control and controllability are most essential for people. From the viewpoint of biobanks, issues of controllability pose challenges. In the information society, people have become accustomed to controlling personal data, which is particularly difficult in relation to biobanks. They expressed strong concerns over the controllability of the goals and benefits of biobanks.
大多数欧洲人并不了解生物样本库是什么。在本研究中，分析了公众对生物样本库以及基因和健康数据收集的看法，并将其与其他收集和传播个人信息的技术及数字网络进行了关联。在这种背景下，人们根据自己在其他技术和数据流方面的日常体验来理解生物样本库。该分析基于在奥地利、芬兰和德国进行的18次焦点小组讨论。我们研究了人们构建和谈论数字网络及生物样本库中信息传播的问题和益处的方式。人们认识到信息社会中个人数据收集存在许多挑战。研究表明，对人们来说，控制和可控性的概念比隐私（一直是生物样本库生物伦理辩论的关键术语）更为重要。从生物样本库的角度来看，可控性问题带来了挑战。在信息社会中，人们已习惯于控制个人数据，但这在生物样本库方面尤其困难。他们对生物样本库的目标和益处的可控性表达了强烈担忧。
