Privacy and property in the biobank context

HEC Forum 22 (3):211-224 (2010)
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
Keywords Privacy  Biobanking  Genetic samples  DNA
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DOI 10.1007/s10730-010-9138-1
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References found in this work BETA
W. A. Parent (1983). Privacy, Morality, and the Law. Philosophy and Public Affairs 12 (4):269-288.
Lars Øystein Ursin (2009). Personal Autonomy and Informed Consent. Medicine, Health Care and Philosophy 12 (1):17-24.
Adam Moore (2008). Defining Privacy. Journal of Social Philosophy 39 (3):411-428.

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Lars Øystein Ursin (2008). Biobank Research and the Right to Privacy. Theoretical Medicine and Bioethics 29 (4):267-285.
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Louis Hodges (1994). The Journalist and Privacy. Journal of Mass Media Ethics 9 (4):197 – 212.

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