Iceland's plan for genomics research: facts and implications.
The government of Iceland has authorized a private, for-profit firm, deCODE Genetics, to construct a database of the population's medical records as part of a larger plan by deCODE for human genetics research. This article presents the background for genetics research in Iceland, the history of deCODE, and the terms of the law authorizing the database. It then examines five objections to the law, based on commercialization, lack of informed consent, risks to privacy, the effects of other research, and financial unfairness. It concludes that the Icelandic model is not a good precedent for similar research elsewhere.
Greely
H T
HT
Stanford University, USA.
D003219:Confidentiality / Q000941:ethics / Q000331:legislation & jurisprudence; D003466:Cultural Characteristics; D016208:Databases, Factual / Q000941:ethics / Q000331:legislation & jurisprudence; D030541:Databases, Genetic / Q000941:ethics / Q000331:legislation & jurisprudence*; D030661:Genetic Privacy / Q000941:ethics / Q000331:legislation & jurisprudence*; D036281:Genetic Research / Q000191:economics* / Q000941:ethics* / Q000331:legislation & jurisprudence*; D006801:Humans; D007055:Iceland; D007221:Industry / Q000191:economics / Q000941:ethics / Q000331:legislation & jurisprudence; D007258:Informed Consent / Q000941:ethics; D007878:Legislation as Topic