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dc.contributor.authorLudvigsson, Jonas F.
dc.contributor.authorHåberg, Siri Eldevik
dc.contributor.authorKnudsen, Gun Peggy
dc.contributor.authorLafolie, Pierre
dc.contributor.authorZoega, Helga
dc.contributor.authorSarkkola, Catharina
dc.contributor.authorvon Kraemer, Stephanie
dc.contributor.authorWeiderpass, Elisabete
dc.contributor.authorNørgaard, Mette
dc.date.accessioned2016-03-14T13:52:16Z
dc.date.available2016-03-14T13:52:16Z
dc.date.issued2015-11-23
dc.description.abstractNational health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies.en_US
dc.identifier.citationClinical Epidemiology 2015, 7:491-508en_US
dc.identifier.cristinIDFRIDAID 1297490
dc.identifier.doihttp://dx.doi.org/10.2147/CLEP.S90589
dc.identifier.issn1179-1349
dc.identifier.urihttps://hdl.handle.net/10037/8937
dc.identifier.urnURN:NBN:no-uit_munin_8473
dc.language.isoengen_US
dc.publisherDove Medical Pressen_US
dc.relation.urihttps://www.dovepress.com/ethical-aspects-of-registry-based-research-in-the-nordic-countries-peer-reviewed-article-CLEPen_US
dc.rights.accessRightsopenAccess
dc.subjectethical reviewen_US
dc.subjectethicsen_US
dc.subjectinstitutional review boarden_US
dc.subjectNordic countriesen_US
dc.subjectregistry-based researchen_US
dc.subjectinformed consenten_US
dc.subjectVDP::Medisinske Fag: 700::Helsefag: 800::Epidemiologi medisinsk og odontologisk statistikk: 803en_US
dc.subjectVDP::Medical disciplines: 700::Health sciences: 800::Epidemiology medical and dental statistics: 803en_US
dc.titleEthical aspects of registry-based research in the Nordic countriesen_US
dc.typeJournal articleen_US
dc.typeTidsskriftartikkelen_US
dc.typePeer revieweden_US


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