Ursin Lars Oystein
Department of Philosophy, Norwegian University of Science and Technology, NTNU-Trondheim, 7491 Trondheim, Norway.
HEC Forum. 2010 Sep;22(3):211-24. doi: 10.1007/s10730-010-9138-1.
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.
研究生物样本库是个人健康和生活方式信息的集合，包括参与者的基因样本，这些样本蕴含着未知但可能具有巨大信息潜力。对参与者来说，参与的风险不是身体伤害，而是其隐私受到侵犯以及此类侵犯可能带来的有害后果。但我们所说的隐私是什么意思？我们在谈论哪些危害？为了解决这些问题，我们需要把握隐私的实质，并在生物样本库的背景下，寻求对财产权和隐私权问题富有成效的观点。本文认为，私人事务的界限和处理方式是在特定社会关系中确定的。因此，关键在于确定哪些信息和活动是或不是他人合法关注的对象。隐私权和财产权应被视为由义务平衡，也就是说，它们是延伸到公共领域的内在关系利益，而不是将这些权利视为对某个对象（例如参与者的生物样本库材料）的控制。
