title: Privacy and property in the biobank context.
abstract: 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.
authors.affiliation: Department of Philosophy, Norwegian University of Science and Technology, NTNU-Trondheim, 7491 Trondheim, Norway. lars.ursin@hf.ntnu.no
authors.forename: Lars Oystein
authors.initials: LO
authors.lastname: Ursin
mesh_terms: 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
chemical_list: D004247:DNA
references.citation: Med Health Care Philos. 2009 Mar;12(1):17-24
references.pmid: 18543075
references.citation: Theor Med Bioeth. 2008;29(4):267-85
references.pmid: 18855123
references.citation: Nat Rev Genet. 2008 May;9(5):406-11
references.pmid: 18379574
references.citation: Med Anthropol. 2005 Jan-Mar;24(1):45-70
references.pmid: 15823897
references.citation: Eur J Public Health. 2006 Aug;16(4):433-40
references.pmid: 16207726
references.citation: Soc Sci Med. 2007 Jan;64(2):272-82
references.pmid: 17050056
references.citation: Nat Biotechnol. 2008 Jan;26(1):31-6
references.pmid: 18183013