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Abstract from

Something is Rotten in the State of Iceland: deCODE Genetics, Population Research and Informed Consent

Jennifer French is a lawyer at Blake Dawson Waldron. She has a Bachelor of Science and a Bachelor of Laws (Honours) from the Australian National University.

This article considers the importance of protecting research subjects in genetic research. Specifically, it looks at one of the earliest, and most controversial, examples of population genetic research, that proposed to be undertaken by deCODE Genetics Inc on the Icelandic population. In undertaking its research deCODE proposed to establish three sepa­rate but interlinked databases each holding medical records, genetic informa­tion or genealogical records (named the Genealogy Genotype Phen­otype Resource database (GGPR). This article considers the estab­lish­ment and development of both deCODE and the GGPR, and the development of and legal challenge to the database of Icelandic medical records. This article also considered the mechanisms for consent used for participation in deCODE’s research and whether such mechanisms adequately protect the participants in its research. This article argues that, rather than being an example to be followed, the story of deCODE should be a warning to others whose research equally depends on the enthusiastic participations of research subjects.

(2006) Volume 24 No1 Law in Context 113

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