Genetic Databases and Consent for Use of Medical Records
The legislation on the Icelandic genetic database provides for an opting-out system for the collection of encoded medical information from individual medical records. From the beginning this has raised criticism, in Iceland itself and abroad. The Supreme Court has now decided that this approach of p...
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Online Access: | http://dx.doi.org/10.1159/000082256 https://www.karger.com/Article/Pdf/82256 |
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crskarger:10.1159/000082256 2024-06-16T07:40:57+00:00 Genetic Databases and Consent for Use of Medical Records Gevers, J.K.M. 2004 http://dx.doi.org/10.1159/000082256 https://www.karger.com/Article/Pdf/82256 en eng S. Karger AG https://www.karger.com/Services/SiteLicenses https://www.karger.com/Services/SiteLicenses Public Health Genomics volume 7, issue 4, page 173-175 ISSN 1662-4246 1662-8063 journal-article 2004 crskarger https://doi.org/10.1159/000082256 2024-05-22T13:00:33Z The legislation on the Icelandic genetic database provides for an opting-out system for the collection of encoded medical information from individual medical records. From the beginning this has raised criticism, in Iceland itself and abroad. The Supreme Court has now decided that this approach of presumed consent is not unconstitutional per se, but that there are not sufficient safeguards to ensure that the information collected is not traceable to individuals. The decision of the court is of importance for the debate (at national and international level) on the legal and ethical aspects of population-based genetic databases. Furthermore, it is interesting because it recognizes the right of close relatives of a deceased person to oppose the collection and use of his or her medical data for genetic research, at least as long as these data may still be identifiable. Article in Journal/Newspaper Iceland Karger Public Health Genomics 7 4 173 175 |
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description |
The legislation on the Icelandic genetic database provides for an opting-out system for the collection of encoded medical information from individual medical records. From the beginning this has raised criticism, in Iceland itself and abroad. The Supreme Court has now decided that this approach of presumed consent is not unconstitutional per se, but that there are not sufficient safeguards to ensure that the information collected is not traceable to individuals. The decision of the court is of importance for the debate (at national and international level) on the legal and ethical aspects of population-based genetic databases. Furthermore, it is interesting because it recognizes the right of close relatives of a deceased person to oppose the collection and use of his or her medical data for genetic research, at least as long as these data may still be identifiable. |
format |
Article in Journal/Newspaper |
author |
Gevers, J.K.M. |
spellingShingle |
Gevers, J.K.M. Genetic Databases and Consent for Use of Medical Records |
author_facet |
Gevers, J.K.M. |
author_sort |
Gevers, J.K.M. |
title |
Genetic Databases and Consent for Use of Medical Records |
title_short |
Genetic Databases and Consent for Use of Medical Records |
title_full |
Genetic Databases and Consent for Use of Medical Records |
title_fullStr |
Genetic Databases and Consent for Use of Medical Records |
title_full_unstemmed |
Genetic Databases and Consent for Use of Medical Records |
title_sort |
genetic databases and consent for use of medical records |
publisher |
S. Karger AG |
publishDate |
2004 |
url |
http://dx.doi.org/10.1159/000082256 https://www.karger.com/Article/Pdf/82256 |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
Public Health Genomics volume 7, issue 4, page 173-175 ISSN 1662-4246 1662-8063 |
op_rights |
https://www.karger.com/Services/SiteLicenses https://www.karger.com/Services/SiteLicenses |
op_doi |
https://doi.org/10.1159/000082256 |
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Public Health Genomics |
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7 |
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4 |
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173 |
op_container_end_page |
175 |
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1802008001084653568 |