Coding and consent: moral challenges of the database project in Iceland
A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised...
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ftgeorgetownuniv:oai::10822/504272 2023-05-15T16:47:25+02:00 Coding and consent: moral challenges of the database project in Iceland Vilhjálmur Árnason, 1953- 2004-02 Article http://hdl.handle.net/10822/504272 eng eng Bioethics 2004 February; 18(1): 27-49 http://hdl.handle.net/10822/504272 269922 Consent Genetics Informed Consent Presumed Consent Research Confidentiality Molecular Biology and Microbiology Genetic Screening / Genetic Testing Informed Consent or Human Experimentation Social Control of Human Experimentation Information Science Ethics 2004 ftgeorgetownuniv 2018-09-14T22:36:00Z A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research. Other/Unknown Material Iceland Georgetown University: DigitalGeorgetown |
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Georgetown University: DigitalGeorgetown |
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English |
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Consent Genetics Informed Consent Presumed Consent Research Confidentiality Molecular Biology and Microbiology Genetic Screening / Genetic Testing Informed Consent or Human Experimentation Social Control of Human Experimentation Information Science Ethics |
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Consent Genetics Informed Consent Presumed Consent Research Confidentiality Molecular Biology and Microbiology Genetic Screening / Genetic Testing Informed Consent or Human Experimentation Social Control of Human Experimentation Information Science Ethics Vilhjálmur Árnason, 1953- Coding and consent: moral challenges of the database project in Iceland |
topic_facet |
Consent Genetics Informed Consent Presumed Consent Research Confidentiality Molecular Biology and Microbiology Genetic Screening / Genetic Testing Informed Consent or Human Experimentation Social Control of Human Experimentation Information Science Ethics |
description |
A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research. |
author |
Vilhjálmur Árnason, 1953- |
author_facet |
Vilhjálmur Árnason, 1953- |
author_sort |
Vilhjálmur Árnason, 1953- |
title |
Coding and consent: moral challenges of the database project in Iceland |
title_short |
Coding and consent: moral challenges of the database project in Iceland |
title_full |
Coding and consent: moral challenges of the database project in Iceland |
title_fullStr |
Coding and consent: moral challenges of the database project in Iceland |
title_full_unstemmed |
Coding and consent: moral challenges of the database project in Iceland |
title_sort |
coding and consent: moral challenges of the database project in iceland |
publishDate |
2004 |
url |
http://hdl.handle.net/10822/504272 |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
269922 |
op_relation |
Bioethics 2004 February; 18(1): 27-49 http://hdl.handle.net/10822/504272 |
_version_ |
1766037505042284544 |