Chapitre 6. Utilisation des banques de données et de matériel biologique dans la recherche scientifique : l'expérience islandaise en regard du droit international de la bioéthique

Abstract

Because of its geographical isolation and the low density of its population, Iceland is the ideal candidate for genetic research. At the instigation of a private company, DeCode Genetics, the Icelandic parliament in 1998 and 2001 passed laws allowing the creation of medical, genetic and genealogical data banks, and a bank of biological material for the needs of epidemiological research conducted on a national level. This legislation has raised strong concern about the respect of human rights recognised by international law. The proposed study above all tackles the problem of the right to autonomy of persons involved in these biothèques and establishes a critical analysis of Icelandic law with regard to the various norms for bioethics that exist in European law and international law.