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Genetic incidental findings: autonomy regained?
Author(s) -
Effy Vayena,
John Tasioulas
Publication year - 2013
Publication title -
genetics in medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 3.509
H-Index - 128
eISSN - 1530-0366
pISSN - 1098-3600
DOI - 10.1038/gim.2013.104
Subject(s) - autonomy , personal autonomy , genetic testing , medicine , psychology , political science , law
but that has received inadequate attention in clinical medicine. They set out a bold, new vision of how to handle genetic infor-mation. However, they have attracted a critical backlash, largely because they deny patients undergoing sequencing a choice as to whether or not to receive a minimum list of incidental findings. Moreover, the ACMG recommendations were pre-sented, and have been widely perceived, as generating a con-flict between the values of patient autonomy and beneficence. Naturally, any proposed sacrifice of patient autonomy merits serious debate.The major criticism brought against the recommendations is that they unacceptably override patients’ consent, and hence their autonomy, which is the chief value protected by informed consent procedures. On this view, patients are wrongly denied the choice of an analysis confined to the “target” genes, and their “right not to know” is violated when they are informed by the clinician of any incidental findings. This departure from the established informed consent regime has been condemned as a disconcerting throwback to the era of medical paternalism.

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