Consent to genetic testing: a family affair?
This chapter explores the extent to which the familial nature of genetic information creates an ethical problem for our current conceptions of informed consent in the context of genetic testing. First, it looks at the current understanding of the role of informed consent in research and clinical practice, and briefly outlines the philosophical assumptions underpinning this concept. Second, it sketches out and assesses arguments that suggest that the new genetic technologies are subtly influencing the meaning (i.e., use) of family. The third section takes an empirical turn, and describes some of the findings of recent research that has explored individuals' motivations for undergoing genetic testing. Finally, the chapter brings these differing strands together to argue that, as it stands, the accepted view of informed consent which is based upon an individualistic model of the person may be inadequate when it comes to genetic testing.
Keywords: informed consent, genetic information, genetic tests, medical research
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