Iceland

Resources

This page is intended to present key information on privacy and genetic research relevant to Iceland. It contains links to key Icelandic public attitudes surveys and reports from relevant organisations. Please use the contact pages to make any suggestions or to inform us of any new research.

Language of privacy

In Iceland the term used for privacy is friðhelgi einkalífsins. More recently the word persónuvernd (vernd means protection, patronage, support) has also been used, but more in relation to data protection.

Eurobarometer

• Directorate General Press and Communication (2005) Social values, science and Technology (Special Eurobarometer 225/ Wave 63.1). EC Directorate General Research. Relevant questions: Q15.a.3, Q17.

Relevant Interests Expressed by the Public

• Gallup Polls conducted in May and November 1998 asked about support for the Health Sector Database Bill. A Gallup poll in April 2000 asked about support for the database. Reported in Morgunbladid (in Icelandic).
• Gudmundsdóttir, M. L. and Nordal S. (2007) “Iceland” in Mätti Hayry, Ruth Chadwick, Vilhjálmur Árnason and Gardar Árnason (Eds.) The Ethics and Governance of Human Genetic Databases: European Perspectives. Cambridge, Cambridge University Press.

Of Interest

• Annas, G (2005) “Family Privacy and Death: Antigone, War, and Medical Research”, New England Journal of Medicine 352(5): 501-505. Includes review of family privacy case, below.
• Árnason, G., Árnason, V. and Nordal, S. (eds.) (2004), Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases, University of Iceland.
• Association of Icelanders for Ethics in Science and Medicine (Mannvernd), containing links to articles on the Iceland Health Sector Database.
• Gudmundsdottir, R. vs. The State of Iceland, Iceland Supreme Court, 2003. The court decided that the rights of individuals for genetic privacy may be undermined by the non-individual character of medical information.
• Iceland data protection information at Privireal
• McKie, R (2004) Icelandic DNA project hit by privacy storm, The Observer
• Pálsson, G. and Hardardóttir, K. E. (2002) “For whom the cell tolls,” Current Anthropology 43: 271-301.
• Winickoff, D. E. (2006) “Genome and Nation. Iceland’s Health Sector Database and its Legacy“, Innovations, Vol. 1 (2), 80-105.