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Privacy and Property in the Biobank Context

机译:生物银行背景下的隐私和财产

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摘要

A research biobank is a collection of personal health and lifestyle information, including genetic samples of yet unknown but possibly large information potential about the participant. For the participants, the risk of taking part is not bodily harm but infringements of their privacy and the harmful consequences such infringements might have. But what do we mean by privacy? Which harms are we talking about? To address such questions we need to get a grip on what privacy is all about and aim for a fruitful perspective on the issues of property and privacy rights in the context of biobanking. This paper argues that the limits and handling of private matters is determined in specific social relations. The crucial point is thus to determine which information and activities are or are not the legitimate concern of others. Privacy and property rights should be seen as balanced by duties, that is as inherently relational interests extending into the public sphere, rather than to see these rights as the control of an object—for instance the participant’s biobank material.
机译:研究性生物库是个人健康和生活方式信息的集合,包括尚未得知但可能具有与参与者有关的大量信息潜力的基因样本。对于参与者而言,参与的风险不是人身伤害,而是侵犯其隐私权以及这种侵犯可能带来的有害后果。但是,隐私是什么意思?我们在谈论哪些危害?为了解决这些问题,我们需要掌握隐私的全部含义,并针对生物银行背景下的财产和隐私权问题寻求富有成果的观点。本文认为,私人事务的限制和处理是由特定的社会关系决定的。因此,关键点是确定哪些信息和活动是其他人的正当关注或不是。应当将隐私和财产权视为职责之间的平衡,即与生俱来的关系利益延伸到公共领域,而不是将这些权利视为对对象的控制,例如参与者的生物库材料。

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