冰岛基因组学研究计划:事实与启示。

Jurimetrics Pub Date : 2000-01-01
H T Greely
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引用次数: 0

摘要

冰岛政府已授权一家私营营利性公司deCODE Genetics建立一个人口医疗记录数据库,这是deCODE人类遗传学研究更大计划的一部分。本文介绍了冰岛遗传学研究的背景,deCODE的历史,以及授权数据库的法律条款。然后,它审查了基于商业化、缺乏知情同意、隐私风险、其他研究的影响以及财务不公平的五种反对法律的理由。它的结论是,冰岛模式对其他地方的类似研究来说不是一个好的先例。
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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.

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