Literature DB >> 25407129

Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions.

Gabrielle M Christenhusz1, Koenraad Devriendt, Hilde Van Esch, Kris Dierickx.   

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.

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Year:  2015        PMID: 25407129     DOI: 10.1007/s11019-014-9611-8

Source DB:  PubMed          Journal:  Med Health Care Philos        ISSN: 1386-7423


  56 in total

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3.  Secondary variants--in defense of a more fitting term in the incidental findings debate.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2013-05-22       Impact factor: 4.246

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Journal:  Hastings Cent Rep       Date:  2012 Sep-Oct       Impact factor: 2.683

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Authors:  Jonathan M Kocarnik; Stephanie M Fullerton
Journal:  JAMA       Date:  2014-02-26       Impact factor: 56.272

Review 9.  Consensus statement: chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies.

Authors:  David T Miller; Margaret P Adam; Swaroop Aradhya; Leslie G Biesecker; Arthur R Brothman; Nigel P Carter; Deanna M Church; John A Crolla; Evan E Eichler; Charles J Epstein; W Andrew Faucett; Lars Feuk; Jan M Friedman; Ada Hamosh; Laird Jackson; Erin B Kaminsky; Klaas Kok; Ian D Krantz; Robert M Kuhn; Charles Lee; James M Ostell; Carla Rosenberg; Stephen W Scherer; Nancy B Spinner; Dimitri J Stavropoulos; James H Tepperberg; Erik C Thorland; Joris R Vermeesch; Darrel J Waggoner; Michael S Watson; Christa Lese Martin; David H Ledbetter
Journal:  Am J Hum Genet       Date:  2010-05-14       Impact factor: 11.025

10.  The disclosure of incidental genomic findings: an "ethically important moment" in pediatric research and practice.

Authors:  Martha Driessnack; Sandra Daack-Hirsch; Nancy Downing; Alyson Hanish; Lisa L Shah; Mohammed Alasagheirin; Christian M Simon; Janet K Williams
Journal:  J Community Genet       Date:  2013-04-10
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  4 in total

1.  Incidental or secondary findings: an integrative and patient-inclusive approach to the current debate.

Authors:  Marlies Saelaert; Heidi Mertes; Elfride De Baere; Ignaas Devisch
Journal:  Eur J Hum Genet       Date:  2018-07-03       Impact factor: 4.246

2.  Experiences and lessons learned by genetic counselors in returning secondary genetic findings to patients.

Authors:  Carly Rost; Karin M Dent; Jeffrey Botkin; Erin Rothwell
Journal:  J Genet Couns       Date:  2020-05-26       Impact factor: 2.537

3.  Incidental findings of uncertain significance: To know or not to know--that is not the question.

Authors:  Bjørn Hofmann
Journal:  BMC Med Ethics       Date:  2016-02-13       Impact factor: 2.652

Review 4.  Incidental Findings with Genomic Testing: Implications for Genetic Counseling Practice.

Authors:  Myra I Roche; Jonathan S Berg
Journal:  Curr Genet Med Rep       Date:  2015-08-25
  4 in total

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