Norway
Resources
This page is intended to present key information on privacy and genetic research relevant to Norway. It contains links to key Norwegian 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 Norwegian the concept of privacy can be best translated as privatlivets fred (in direct translation: ‘the peace of the private life’). Another term that is being used is personvern (in direct translation: protection of person). The term personvern consists of two words: person refers to the individual human being, while vern has multiple meanings, from physical structures of defence via protection against violence and abuse to organized protection of groups. The seminal works include and article by Ragnar Dag Blekeli (1974) where he explained the shift of use from privatlivets fred to personvern.
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
Surveys giving some indication of public attitudes towards genetic privacy and/or bio-banking in Norway include:
- Holmen, J., Kjelsaas, M. B., Krüger, Ø. et al. (2004) “Befolkningens holdninger til genetisk epidemiologi illustrert ved spørsmål om fornyet samtykke til 61246 personere – Helseundersøkelsen i Nord-Trøndelag (The attitudes of the population to genetic epidemiology illustrated by renewed consent for 61246 persons – The Nord-Trøndelag Health Study).” Norsk epidemiologi 14: 27-31.
- Skolbekken, J-A , Ursin, L. Ø., Solberg, B. et al (2005) “Not worth the paper it’s written on? Informed consent and biobank research in a Norwegian context” Critical Public Health 15(4): 335-347.
- Stegmayr, B. and Asplund, K. (2002) “Informed consent for genetic research on blood stored for more than a decade: A population based study.” British Medical Journal 325: 634-635.
Relevant Interests Expressed in Different Contexts
- Statistics Norway (1997) The national survey on attitudes towards privacy
- PRISE Project (Privacy enhancing shaping of security research and technology – A participatory approach to develop acceptable and accepted principles for European Security Industries and Policies). EC-funded project. Norwegian citizens interviewed to investigate their attitude towards privacy and security.
- D 5.5 Norwegian report - Interview meeting about security technologies and privacy.
- Annexes to D 5.5 Norwegian report
Organisations and Industry Reports
- National Committee for Medical and Health Research Ethics (1993) Registrering, bruk og gjenbruk av genetiske data (report on registry, use and re-use of genetic data).
- Norwegian University of Science and Technology (NTNU) (2004) Medical technology: health surveys and biobanking. A foresight analysis towards 2020. Trondheim: NTNU.
Of Interest
- Forskningsbiobanker (Mapping the language of research biobanks and health registries - From traditional biobanking to research biobanking) 01/01/04-31/12/07, Norway.
- National Committee for Medical and Health Research Ethics (2004) Nr. 6 Medisinsk epidemiologi og forskningsetikk (report on medical epidemiology and research ethics).
- NTNU website on ethics in biobanking.
- Norway data protection information at Privireal
- Pálsson, G. and Hardardóttir, K. E. (2002) “For whom the cell tolls,” Current Anthropology 43: 271-301.
