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Iceland's plan for genomics research: facts and implications
1Stanford University, USA.
Jurimetrics
|November 22, 2005
Summary
Iceland
Area of Science:
- Bioethics
- Human Genetics Research
- Population Health Data
Background:
- Iceland's history of genetics research.
- Establishment and aims of deCODE Genetics.
- Legislative framework for a national genetics database.
Purpose of the Study:
- To present the background of Iceland's genetics research.
- To detail the history and legal authorization of deCODE Genetics' population database.
- To examine ethical and practical objections to the Icelandic model.
Main Methods:
- Review of Icelandic genetics research history.
- Analysis of the law authorizing deCODE's database.
- Examination of five key objections to the database.
Main Results:
- DeCODE Genetics authorized to build a population medical records database.
- Concerns raised regarding commercialization, consent, privacy, and fairness.
- The Icelandic model is deemed unsuitable for other regions.
Conclusions:
- The Icelandic genetics database model presents significant ethical and practical challenges.
- Objections include issues of informed consent, privacy risks, and commercialization.
- The study concludes the model is not a replicable precedent for global genetics research.
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