ArticleBMC medical ethics2015
Population attitudes towards research use of health care registries: a population-based survey in Finland.
Article in BMC medical ethics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 15 citations in OpenAlex.
- A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency.Systematic reviews · 2020Pooled it
- A stakeholder-inclusive conceptual framework for modeling routinely collected health data for therapeutic decision-making illustrated by means of multistate models.BMC medical research methodology · 2026Article
- Alcohol use in Early Midlife: Findings from the Age 37 Follow-Up Assessment of the FinnTwin12 Cohort.Behavior genetics · 2025Article
- Patients' and Publics' Preferences for Data-Intensive Health Research Governance: Survey Study.JMIR human factors · 2022Article
- A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent.Systematic reviews · 2021Article
- Willingness to Share yet Maintain Influence: A Cross-Sectional Study on Attitudes in Sweden to the Use of Electronic Health Data.Public health ethics · 2021Article
- Clinical genetics in transition-a comparison of genetic services in Estonia, Finland, and the Netherlands.Journal of community genetics · 2021Article
- A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.Health policy (Amsterdam, Netherlands) · 2019Review
- The MATEX cohort - a Finnish population register birth cohort to study health effects of prenatal exposures.BMC public health · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRegister-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.
methodsMail survey questionnaire sent to a random sample of 1000 Finns.
resultsParticipation 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.
conclusionsThe 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.