Ethical aspects of registry-based research in the Nordic countries
Jonas F Ludvigsson,1,2 Siri E Håberg,3 Gun Peggy Knudsen,3 Pierre Lafolie,4,5 Helga Zoega,6 Catharina Sarkkola,7 Stephanie von Kraemer,7 Elisabete Weiderpass,1,7–10 Mette Nørgaard11 1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, 2Department of Pediatrics, Ör...
Published in: | Clinical Epidemiology |
---|---|
Main Authors: | , , , , , , , , |
Format: | Article in Journal/Newspaper |
Language: | English |
Published: |
Dove Press
2015
|
Subjects: | |
Online Access: | https://www.dovepress.com/ethical-aspects-of-registry-based-research-in-the-nordic-countries-peer-reviewed-fulltext-article-CLEP |
id |
ftdovepress:oai:dovepress.com/24703 |
---|---|
record_format |
openpolar |
spelling |
ftdovepress:oai:dovepress.com/24703 2023-05-15T16:47:31+02:00 Ethical aspects of registry-based research in the Nordic countries Ludvigsson,Jonas F HÃ¥berg,Siri E Knudsen,Gun Peggy Lafolie,Pierre Zoega,Helga Sarkkola,Catharina von Kraemer,Stephanie Weiderpass,Elisabete Nørgaard,Mette 2015-11-23 text/html https://www.dovepress.com/ethical-aspects-of-registry-based-research-in-the-nordic-countries-peer-reviewed-fulltext-article-CLEP en eng Dove Press info:eu-repo/semantics/altIdentifier/doi/10.2147/CLEP.S90589 https://www.dovepress.com/ethical-aspects-of-registry-based-research-in-the-nordic-countries-peer-reviewed-fulltext-article-CLEP info:eu-repo/semantics/openAccess Clinical Epidemiology Review info:eu-repo/semantics/article 2015 ftdovepress https://doi.org/10.2147/CLEP.S90589 2022-12-27T21:57:30Z Jonas F Ludvigsson,1,2 Siri E Håberg,3 Gun Peggy Knudsen,3 Pierre Lafolie,4,5 Helga Zoega,6 Catharina Sarkkola,7 Stephanie von Kraemer,7 Elisabete Weiderpass,1,7–10 Mette Nørgaard11 1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, 2Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; 3Norwegian Institute of Public Health, Oslo, Norway; 4Department of Medicine, Clinical Pharmacology Unit, 5The Stockholm Regional Ethical Review Board, Karolinska Institutet, Stockholm, Sweden; 6Center of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; 7Genetic Epidemiology Group, Folkhälsan Research Center, Helsinki, Finland; 8Department of Community Medicine, Faculty of Health Sciences, University of Tromsø, 9The Arctic University of Norway, Tromsø, 10Department of Research, Cancer Registry of Norway, Oslo, Norway; 11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Abstract: National 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 ... Article in Journal/Newspaper Iceland Reykjavík Reykjavík Arctic University of Norway University of Tromsø Dove Medical Press Arctic Reykjavík Norway Tromsø Knudsen ENVELOPE(16.057,16.057,67.137,67.137) Clinical Epidemiology 491 |
institution |
Open Polar |
collection |
Dove Medical Press |
op_collection_id |
ftdovepress |
language |
English |
topic |
Clinical Epidemiology |
spellingShingle |
Clinical Epidemiology Ludvigsson,Jonas F Håberg,Siri E Knudsen,Gun Peggy Lafolie,Pierre Zoega,Helga Sarkkola,Catharina von Kraemer,Stephanie Weiderpass,Elisabete Nørgaard,Mette Ethical aspects of registry-based research in the Nordic countries |
topic_facet |
Clinical Epidemiology |
description |
Jonas F Ludvigsson,1,2 Siri E Håberg,3 Gun Peggy Knudsen,3 Pierre Lafolie,4,5 Helga Zoega,6 Catharina Sarkkola,7 Stephanie von Kraemer,7 Elisabete Weiderpass,1,7–10 Mette Nørgaard11 1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, 2Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; 3Norwegian Institute of Public Health, Oslo, Norway; 4Department of Medicine, Clinical Pharmacology Unit, 5The Stockholm Regional Ethical Review Board, Karolinska Institutet, Stockholm, Sweden; 6Center of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; 7Genetic Epidemiology Group, Folkhälsan Research Center, Helsinki, Finland; 8Department of Community Medicine, Faculty of Health Sciences, University of Tromsø, 9The Arctic University of Norway, Tromsø, 10Department of Research, Cancer Registry of Norway, Oslo, Norway; 11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Abstract: National 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 ... |
format |
Article in Journal/Newspaper |
author |
Ludvigsson,Jonas F Håberg,Siri E Knudsen,Gun Peggy Lafolie,Pierre Zoega,Helga Sarkkola,Catharina von Kraemer,Stephanie Weiderpass,Elisabete Nørgaard,Mette |
author_facet |
Ludvigsson,Jonas F Håberg,Siri E Knudsen,Gun Peggy Lafolie,Pierre Zoega,Helga Sarkkola,Catharina von Kraemer,Stephanie Weiderpass,Elisabete Nørgaard,Mette |
author_sort |
Ludvigsson,Jonas F |
title |
Ethical aspects of registry-based research in the Nordic countries |
title_short |
Ethical aspects of registry-based research in the Nordic countries |
title_full |
Ethical aspects of registry-based research in the Nordic countries |
title_fullStr |
Ethical aspects of registry-based research in the Nordic countries |
title_full_unstemmed |
Ethical aspects of registry-based research in the Nordic countries |
title_sort |
ethical aspects of registry-based research in the nordic countries |
publisher |
Dove Press |
publishDate |
2015 |
url |
https://www.dovepress.com/ethical-aspects-of-registry-based-research-in-the-nordic-countries-peer-reviewed-fulltext-article-CLEP |
long_lat |
ENVELOPE(16.057,16.057,67.137,67.137) |
geographic |
Arctic Reykjavík Norway Tromsø Knudsen |
geographic_facet |
Arctic Reykjavík Norway Tromsø Knudsen |
genre |
Iceland Reykjavík Reykjavík Arctic University of Norway University of Tromsø |
genre_facet |
Iceland Reykjavík Reykjavík Arctic University of Norway University of Tromsø |
op_relation |
info:eu-repo/semantics/altIdentifier/doi/10.2147/CLEP.S90589 https://www.dovepress.com/ethical-aspects-of-registry-based-research-in-the-nordic-countries-peer-reviewed-fulltext-article-CLEP |
op_rights |
info:eu-repo/semantics/openAccess |
op_doi |
https://doi.org/10.2147/CLEP.S90589 |
container_title |
Clinical Epidemiology |
container_start_page |
491 |
_version_ |
1766037611207458816 |