The assent of a nation: genethics and Iceland
The Icelandic parliament passed legislation authorizing the establishment of a national health sector database which will be sponsored financially by private enterprises through DeCode Genetics Inc. Health related data will be gathered from patients, without their informed consent, from all points o...
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crwiley:10.1034/j.1399-0004.1999.550404.x 2024-06-02T08:09:16+00:00 The assent of a nation: genethics and Iceland McInnis, Melvin G 1999 http://dx.doi.org/10.1034/j.1399-0004.1999.550404.x https://api.wiley.com/onlinelibrary/tdm/v1/articles/10.1034%2Fj.1399-0004.1999.550404.x https://onlinelibrary.wiley.com/doi/pdf/10.1034/j.1399-0004.1999.550404.x en eng Wiley http://onlinelibrary.wiley.com/termsAndConditions#vor Clinical Genetics volume 55, issue 4, page 234-239 ISSN 0009-9163 1399-0004 journal-article 1999 crwiley https://doi.org/10.1034/j.1399-0004.1999.550404.x 2024-05-03T10:52:04Z The Icelandic parliament passed legislation authorizing the establishment of a national health sector database which will be sponsored financially by private enterprises through DeCode Genetics Inc. Health related data will be gathered from patients, without their informed consent, from all points of contact with Icelandic public and private health care providers. A centralized data curator will ‘non‐personalize’ the identity of the subjects in a one‐way coding system which the government and DeCode Genetics argue overrides the need for informed consent. This legislation is in conflict with the European Data Protection Act, which requires informed consent for the collection of personal data. The law raises many ethical questions regarding the central tenets of informed consent, the power of government, the rights of the human subject, and finally, the responsibility of the clinician balancing commitments of the patient and research. Article in Journal/Newspaper Iceland Wiley Online Library Clinical Genetics 55 4 234 239 |
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Wiley Online Library |
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description |
The Icelandic parliament passed legislation authorizing the establishment of a national health sector database which will be sponsored financially by private enterprises through DeCode Genetics Inc. Health related data will be gathered from patients, without their informed consent, from all points of contact with Icelandic public and private health care providers. A centralized data curator will ‘non‐personalize’ the identity of the subjects in a one‐way coding system which the government and DeCode Genetics argue overrides the need for informed consent. This legislation is in conflict with the European Data Protection Act, which requires informed consent for the collection of personal data. The law raises many ethical questions regarding the central tenets of informed consent, the power of government, the rights of the human subject, and finally, the responsibility of the clinician balancing commitments of the patient and research. |
format |
Article in Journal/Newspaper |
author |
McInnis, Melvin G |
spellingShingle |
McInnis, Melvin G The assent of a nation: genethics and Iceland |
author_facet |
McInnis, Melvin G |
author_sort |
McInnis, Melvin G |
title |
The assent of a nation: genethics and Iceland |
title_short |
The assent of a nation: genethics and Iceland |
title_full |
The assent of a nation: genethics and Iceland |
title_fullStr |
The assent of a nation: genethics and Iceland |
title_full_unstemmed |
The assent of a nation: genethics and Iceland |
title_sort |
assent of a nation: genethics and iceland |
publisher |
Wiley |
publishDate |
1999 |
url |
http://dx.doi.org/10.1034/j.1399-0004.1999.550404.x https://api.wiley.com/onlinelibrary/tdm/v1/articles/10.1034%2Fj.1399-0004.1999.550404.x https://onlinelibrary.wiley.com/doi/pdf/10.1034/j.1399-0004.1999.550404.x |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
Clinical Genetics volume 55, issue 4, page 234-239 ISSN 0009-9163 1399-0004 |
op_rights |
http://onlinelibrary.wiley.com/termsAndConditions#vor |
op_doi |
https://doi.org/10.1034/j.1399-0004.1999.550404.x |
container_title |
Clinical Genetics |
container_volume |
55 |
container_issue |
4 |
container_start_page |
234 |
op_container_end_page |
239 |
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1800754950277431296 |