Title: Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions
Authors: Christenhusz, Gabrielle M ×
Devriendt, Koenraad
Van Esch, Hilde
Dierickx, Kris #
Issue Date: Aug-2015
Publisher: Kluwer Academic Publishers
Series Title: Medicine, Health Care and Philosophy vol:18 issue:3 pages:361-370
Abstract: While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative and empirical ethical literature. Four ethical signposts are thereby developed to help guide disclosure discussions. These are: respectful sharing of the clinician's expertise; transparent communication; epistemic modesty; and respect for the embedded nature of the patient. We conclude by considering the most common current disclosure positions in the light of the four ethical signposts.
ISSN: 1386-7423
Publication status: published
KU Leuven publication type: IT
Appears in Collections:Department of Human Genetics - miscellaneous
Interfaculty Centre for Biomedial Ethics and Law
× corresponding author
# (joint) last author

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