Data protection laws and their implementation have led to serious restrictions on access to personal data for research purposes. This seriously affects the development of social medicine and public health by making effective prevention of illness, and rational planning of health services, and their evaluation impossible in many instances. The conflict between people's need for knowledge about prevention and cure of illness and the control over personal data must be solved. Therefore, it is necessary to change the laws and ensure access to data for research use in accordance with the guidelines laid down by the European Science Foundation.
1. Bekendtgörelse af lov om offentlige myndigheders registre (Announcement of laws on public authorities' registers). Copenhagen: Justitsministeriets lovbekendtgörelse, 1987: 621.
2.
2. Lög um skráningu og meofero persónuupplysinga (Laws about registration and use of personal information), 1989: 121. In: Ársskýrsla tölvunefndar (Report of the data protection committee) 1989. Reykjavik 1990.
3.
3. Lov om personregistre, m.m. (Laws about registers of persons) 1978, 48Djönne E, Grönn T, Hafli T. Personregisterloven med kommentarer. Oslo: Tano, 1987.
5. Registertilsynets årsberetning (Report of the data protection authority) 1989. Copenhagen: Registertilsynet, 1990.
6.
6. Proposal for a Council Directive concerning the protection of individuals in relation to the processing of personal data. COM (90) 314 final – SYN 287. Brüssels 1990.
7.
7. Häfner H, Pfeifer-Kurda M. The impact of data protection laws on the Mannheim case register. In: ten Horn GHMM, Giel R, Gulbinat WH, Henderson JH, eds. Psychiatric Case Registers in Public Health. Amsterdam: Elsevier, 1986: 366–71.
8.
8. Helgason T. Etik og psykiatrisk forskning (Ethics and psychiatric research). In: Tvång-autonomi; etik i psykiatri. Stockholm: Socialstyrelsen, SoS rapport1991; 19: 130–9.
9.
9. Dahl AA. Bruk av pasientregistre i psykiatrisk forskning i Norge. Muligheter, begrensninger og etiske problemer (Use of psychiatric case registers in research in Norway. Possibilities, restrictions and ethical problems). Nord Psykiatr Tidsskr1988; 42: 257–64.
11. Blomqvist C. Medisinsk etik. Stockholm: Natur och Kultur, 1971.
12.
12. Bernard C. An introduction to the study of experimental medicine (1865). Green HC. New York: Henry Schuman, 1949. Cit. by Musto D. A historical perspective. In: Bloch S, Chodoff P, eds. Psychiatric ethics. Oxford: Oxford University Press, 1991: 15–32.
13.
13. Last J. Dictionary of epidemiology. 2nd ed.Oxford: Oxford University Press, 1988.
14.
14. World Health Organization. Epidemiology of mental disorders. WHO, Tech Rep Ser 1960: 185.
15.
15. Doll R. Public benefit and personal privacy: The problems of medical investigation in the community. Proc R Soc Med1974; 67: 1281–5.
16.
16. Munk-Jörgensen P.Why has the incidence of schizophrenia in Dansih psychiatric institutions decreased since 1970?Acta Psychiatr Scand1987; 75: 62–8.
17.
17. Smedby B, Adami HO, Westrin CG. Forskningens behov av centrala register (Research needs central registers). In: Forskning och utveckling – epidemiologi, kvalitetssäkring och Spris utvecklingsprojekt. Stockholm: Statens offentliga utredningar1991; 17: 7–22.
18.
18. European Science Foundation.Statement concerning the protection of privacy and the use of personal data for research. In: Report 1980. Strasbourg: ESF, 1980: 63–7.
19.
19. European Science Foundation.Statement concerning the protection of privacy and the use of personal data for research (revised version adopted by the Assembly of ESF on 19 November 1985). In: Annual Report 1985. Strasbourg: ESF, 1985: 69–72.
20.
20. WHO-CIOMS.Proposed International Guidelines for Biomedical Research Involving Human Subjects. Geneva, CIOMS, 1982.
21.
21. CIOMS (Council for International Organizations of Medical Sciences).Development of international guidelines for epidemiological research and practice. XXVth CIOMS Conference. 1990 (Mimeographed).
22.
22. Vaughan JP, Morrow RH, (eds). Manual of epidemiology for district health management. Geneva: World Health Organization, 1989: 169–74.
23.
23. COMAC-EPIDEMIOLOGY.Ethical guidelines in epidemiological research. Biomedical & Health Research Newsletter. European Community1991; 3: 7–8.
24.
24. Oldinger E. Nordisk centralstyrelsemöte i Sunne (Meeting of the boards of the nordic medical associations in Sunne): Balanserad nordisk läkararbetsmarknad fram till sekelskiftet. Nord Med1990; 105: 238–40.
25.
25. World medical Association.Computers in Medicine. Læknablaoio (The Icelandic Medical Journal). 1987; 73: 111.
26.
26. Last JM. Guidelines on ethics for epidemiologists. Int J Epidemiol1990; 19: 226–9.
