Predictive Genetic Testing,Uncertainty, and Informed Consent

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Author(s): Eduardo A. Rueda (Universidad Javeriana, Colombia)
Copyright: 2009
Pages: 22
Source title: Handbook of Research on Technoethics
Source Author(s)/Editor(s): Rocci Luppicini (University of Ottawa, Canada)and Rebecca Adell (University of Ottawa, Canada)
DOI: 10.4018/978-1-60566-022-6.ch031

Keywords: Information Ethics / Information Science Reference / IT Security and Ethics / Security & Forensics

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Abstract

This chapter focuses on showing legitimate ways for coping with uncertainties within the informed consent process of predictive genetic testing. It begins by indicating how uncertainty should be theoretically understood. Then, it describes three dimensions of uncertainty with regard to both the role of genes in pathogenesis and the benefit to patients of undergoing predictive genetic testing. Subsequently, the ways by which institutions tame these uncertainties are explained. Since viewing genes as exceptional informational entities plays an important role in taming uncertainties, it explains why this conception should be abandoned. Then, it discusses how institutional taming of uncertainty becomes a source of paternalism. What is stressed is that in order to avoid paternalism and ensure transparency within the informed consent process, open-to-uncertainty mechanisms should be implemented before the public and the individual. How patients should deal with potential implications of testing for their relatives is also considered.

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Predictive Genetic Testing,Uncertainty, and Informed Consent

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