Sweden

Resources

This page is intended to present key information on privacy and genetic research relevant to Sweden. It contains links to key Swedish 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

The term most used in Sweden to describe the equivalent of English privacy would be personlig integritet which literally means personal integrity. The concept privatliv (which means private life) is also used in Sweden, more or less as a synonym of personal integrity, although less frequent. In situations where disclosure of information is restricted the term tystnadsplikt (duty/obligation of silence) or sekretess (secrecy) would be used. In research ethics or business relations the concept konfidentialitet (confidentiality) might be used.

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.
• Gaskell, George et al (2006) European and Biotechnology in 2005: Patterns and Trends (Eurobarometer 64.3). London, London School of Economics. A report to the European Commission’s Directorate-General for Research. Relevant question: Q5.3.

Relevant Interests Expressed by the Public

In Sweden many studies of public attitudes towards Biobanks have been conducted, including:

• Eriksson, K.E. (2007) “Sweden” 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.
• Hoeyer, Olofsson, Mörndal & Lynöe (2005) The Ethics of Research Using Biobanks: Reason to Question the Importance Attributed Informed Consent. Archives of Internal Medicine, 165, 97-100.
• Hoeyer, K. (2005) The Role of Ethics in Commercial Genetic Research: Notes on the Notion of Commodification. Medical Anthropology, 24(1), 45-70.
• Hoeyer, Olofsson, Mörndal & Lynöe (2004) Informed Consent and Biobanks: A Population-Based Study of Attitudes Towards Tissue Donation for Genetic Research. Scandinavian Journal of Public Health, 32(3), 224-229.
• Hoeyer (2002) Conflicting Notions of Personhood in Genetic Research. Anthropology Today 18(5): 9-13.
• Linus Johnsson, Mats G Hansson, Stefan Eriksson, and Gert Helgesson (2008) “Patients’ refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study” BMJ 337: a345.
• Kettis-Lindblad, Ring, Viberth & Hansson (2007) Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: A population-based study. Scandinavian Journal of Public Health, 35 (2), 148-156.
• Kettis-Lindblad, Ring, Viberth & Hansson, (2006) Genetic Research and Donation of Tissue Samples to Biobanks. What do Potential Sample Donors in the Swedish General Public Think? The European Journal of Public Health, 16(4): 433-440.
• Nilstun, T., and Hermerén, G. (2006) Human tissue samples and ethics - attitudes of the general public in Sweden to biobank research. Medicine, Health Care and Philosophy, 9(1): 81-86.
• 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(7365), 634-635.

Relevant Interests Expressed in Different Contexts

Citizen’s Jury on Genetic Testing

• Swedish Gene Technology Board (2000) held a lay conference on “Genetic testing for whom?” Gentester för vem? Rapport från en lekmannakonferens om gentester den 14-15 oktober 2000. Gentekniknämndens utredningsserie 2001.

Studies Linked to Privacy in General

• European Values Study 1999 Included questions on value of developments offering “greater emphasis on the development of the individual”.

Organisation and Industry Reports

• Survey of attitudes on the protection of personal integrity by Statistics Sweden at the request of the Commission on Integrity Protection. See Appendix 4 to the report of the Commission on Integrity Protection, Skyddet för den personliga integriteten – Kartläggning och analys (SOU 2007:22, Stockholm, Regeringskansliet), Part 2, pp. 467-589.
• Patientudredningen (2005) Din patientjournal: Enkätundersökning 2005. Stockholm, Statistiska centralbyrån. (Survey of attitudes of the public to uses of their medical information by Statistics Sweden made at the request of the Commission on Patient Data, in Swedish)

Of Interest

• Hoeyer, K. (2006) The power of ethics: a case study from Sweden on the social life of moral concerns in policy processes. Sociology of Health and Illness, 28(6), 785-801.
• Hoeyer, K. (2005) Studying Ethics as Policy: The Naming and Framing of Moral Problems in Genetic Research. Current Anthropology, 46, 71-90.
• Sweden data protection information at Privireal