Coding and Consent: Moral Challenges of the Database Project in Iceland
ABSTRACT 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 e...
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crwiley:10.1111/j.1467-8519.2004.00377.x 2024-09-15T18:13:19+00:00 Coding and Consent: Moral Challenges of the Database Project in Iceland Árnason, Vilhjálmur 2004 http://dx.doi.org/10.1111/j.1467-8519.2004.00377.x https://api.wiley.com/onlinelibrary/tdm/v1/articles/10.1111%2Fj.1467-8519.2004.00377.x https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1467-8519.2004.00377.x en eng Wiley http://onlinelibrary.wiley.com/termsAndConditions#vor Bioethics volume 18, issue 1, page 27-49 ISSN 0269-9702 1467-8519 journal-article 2004 crwiley https://doi.org/10.1111/j.1467-8519.2004.00377.x 2024-07-30T04:23:43Z ABSTRACT 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. Article in Journal/Newspaper Iceland Wiley Online Library Bioethics 18 1 27 49 |
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ABSTRACT 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. |
format |
Article in Journal/Newspaper |
author |
Árnason, Vilhjálmur |
spellingShingle |
Árnason, Vilhjálmur Coding and Consent: Moral Challenges of the Database Project in Iceland |
author_facet |
Árnason, Vilhjálmur |
author_sort |
Árnason, Vilhjálmur |
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 |
publisher |
Wiley |
publishDate |
2004 |
url |
http://dx.doi.org/10.1111/j.1467-8519.2004.00377.x https://api.wiley.com/onlinelibrary/tdm/v1/articles/10.1111%2Fj.1467-8519.2004.00377.x https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1467-8519.2004.00377.x |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
Bioethics volume 18, issue 1, page 27-49 ISSN 0269-9702 1467-8519 |
op_rights |
http://onlinelibrary.wiley.com/termsAndConditions#vor |
op_doi |
https://doi.org/10.1111/j.1467-8519.2004.00377.x |
container_title |
Bioethics |
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18 |
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1 |
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27 |
op_container_end_page |
49 |
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1810451042506113024 |