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Biobanks: Investigating in Regnlation

Biobanks: Investigating in Regnlation and Contents 1. Iceland's DNA 2. The Future Use of Human Biological Materials 3. Growing Need for Regulation 4. Proposed Regulatory Models 4.1. Human Research Subject Protection Model 4.2. Data Protection Model 4.3. Human Biological Materials Model 5. Arguments for a Specific Regulatory Model 6. Conclusions 1. Iceland's DNA 'Attention shoppers: special today - Iceland's DNA,' was the 1998 heading by which the world learned that the Icelandic Parliament voted in favour of an act 'selling' the "genetic property' of the Icelandic population to deCode Genetics, an private U.S. biotechnology company.2 In less dramatic terms, the Icelandic Parliament voted in favour of the Act on a Health Sector Database. This Act allows the Government to assign a license for setting up a national health sector database. For the construction of this national database, the licensee can collect the medical data of every Icelander using their medical files. The Icelanders do not have the opportunity to give their informed consent for the collection of their (coded) medical data; they can only opt out of registration in the central database.3 What especially concerned the public and the research community, was the 'sale' by the Icelandic authorities of the 'genetic characteristics' http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Baltic Yearbook of International Law Online Brill

Biobanks: Investigating in Regnlation

Baltic Yearbook of International Law Online , Volume 2 (1): 17 – Jan 1, 2002

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Publisher
Brill
Copyright
Copyright © Koninklijke Brill NV, Leiden, The Netherlands
eISSN
2211-5897
DOI
10.1163/221158902X00037
Publisher site
See Article on Publisher Site

Abstract

and Contents 1. Iceland's DNA 2. The Future Use of Human Biological Materials 3. Growing Need for Regulation 4. Proposed Regulatory Models 4.1. Human Research Subject Protection Model 4.2. Data Protection Model 4.3. Human Biological Materials Model 5. Arguments for a Specific Regulatory Model 6. Conclusions 1. Iceland's DNA 'Attention shoppers: special today - Iceland's DNA,' was the 1998 heading by which the world learned that the Icelandic Parliament voted in favour of an act 'selling' the "genetic property' of the Icelandic population to deCode Genetics, an private U.S. biotechnology company.2 In less dramatic terms, the Icelandic Parliament voted in favour of the Act on a Health Sector Database. This Act allows the Government to assign a license for setting up a national health sector database. For the construction of this national database, the licensee can collect the medical data of every Icelander using their medical files. The Icelanders do not have the opportunity to give their informed consent for the collection of their (coded) medical data; they can only opt out of registration in the central database.3 What especially concerned the public and the research community, was the 'sale' by the Icelandic authorities of the 'genetic characteristics'

Journal

Baltic Yearbook of International Law OnlineBrill

Published: Jan 1, 2002

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