Iceland's Plan for Genomics Research: Facts and Implications

Posted: 30 Jul 2000

Abstract

The Republic of Iceland has authorized a private, for-profit firm, deCODE Genetics, to construct a database of its population's medical records as part of a larger plan by deCODE for human genetics research. This effort has been much discussed, although often without sufficient understanding of the existing statute and the actual status of deCODE's plans. This article attempts first to provide the necessary background information on Iceland, genetics research in Iceland, deCODE, and the terms of the law authorizing Iceland's Health Sector Database. It then examines five objections to the statute, and the larger plan, those based on commercialization, lack of informed consent, risks to privacy, the effects on other esearch, and financial unfairness. It concludes that the Icelandic plan is not a good precedent for similar research elsewhere.

Suggested Citation

Greely, Henry (Hank) T., Iceland's Plan for Genomics Research: Facts and Implications. Jurimetrics, Vol. 40, Pp. 153-191, 2000. Available at SSRN: https://ssrn.com/abstract=228773

Henry (Hank) T. Greely (Contact Author)

Stanford Law School ( email )

559 Nathan Abbott Way
Stanford, CA 94305-8610
United States
650-723-2517 (Phone)
650-725-0253 (Fax)

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