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Genetic testing: affected parties and decision making

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The network of issues around information obtained from genetic testing is wide and complex. While risk assessment, awareness and discussion are often public driven, and in many instances, including that of nuclear power, are allied with democratic principles, the case of gene technology and genetic testing appears to be different. The opportunity for risk assessment by gene testing is rejected by many, and this rejection is supported by the claim of the right not to know. This article discusses the background to this development, and argues that decisions that consider issues related to genetic testing should be taken with the participation of affected parties.
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Keywords: affected parties; bioethics; decision making; genetic risk; genetic testing; right not to know

Document Type: Research Article

Affiliations: Institute of Sociology and Political Science Norwegian University of Science and Technology 7491, Trondheim Norway

Publication date: July 1, 2004

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