Population attitudes towards research use of health care registries: a population-based survey in Finland

BACKGROUND: Register-based research can provide important and valuable contributions to public health research, but involves ethical issues concerning the balance of public health benefits and individual autonomy. This study aimed to describe the opinions of the Finnish public about these issues. METHODS: Mail survey questionnaire sent to a random sample of 1000 Finns. RESULTS: Participation proportion was 42 %, with 258 women and 160 men. The majority of the participants (61 %) were willing to provide their identifiable health information for research. Almost half of the participants (48 %) would, nevertheless, like to be informed when their information is used. A third (30 %) indicated no need for informed consent in register-based research, a similar proportion felt it should be obtained for every study, and 40 % thought it necessary in some situations, such as studies addressing a sensitive study topic. As for the best policy for obtaining consent, the majority (86 %) favoured broader consent methods: one consent covering a certain register or a research topic. Half of the participants (55 %) desired a required ethical evaluation from register-based research addressing a sensitive issue. Privacy protection was the most common concern for register-based research. More than half of the participants were either content with the current Finnish laws concerning register-based research or wanted to liberalize them to advance research. CONCLUSIONS: The Finnish public is supportive of register-based research, but the requirement for informed consent divides opinions and many would at least like to be informed of the research use of their information. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12910-015-0040-x) contains supplementary material, which is available to authorized users.