Privacy and property in the biobank context.
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.
Ursin
Lars Oystein
LO
Department of Philosophy, Norwegian University of Science and Technology, NTNU-Trondheim, 7491 Trondheim, Norway. lars.ursin@hf.ntnu.no
D003219:Confidentiality / Q000331:legislation & jurisprudence*; D004247:DNA; D030541:Databases, Genetic / Q000331:legislation & jurisprudence; D006801:Humans; D009664:Norway; D010067:Ownership / Q000331:legislation & jurisprudence*; D014015:Tissue Banks / Q000941:ethics / Q000331:legislation & jurisprudence
D004247:DNA
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