Literature DB >> 32453499

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

Carly Rost1, Karin M Dent1,2, Jeffrey Botkin2, Erin Rothwell3.   

Abstract

Few studies have explored the real-world experiences and strategies of genetic counselors involved in the process of returning secondary findings (SFs). This study aimed to describe and categorize the experiences for the return of SFs from clinical sequencing. Semi-structured telephone interviews with 21 genetic counselors representing 56 incidences were conducted. A content analysis was conducted on the transcripts through an iterative, team-based approach. Four common categories emerged across all interviews. These included (a) the importance of pretest counseling for the return of SFs, (b) how primary test results influenced the level of importance placed on the SFs, (c) patients' emotional reactions from receiving SF results, and (d) how returning SFs changed future pretest counseling and consent. This study identified experiences and common practices by genetic counselors who returned SFs. More research is needed to assess how genetic counselors' specific strategies improve patient comprehension and medical actions.
© 2020 National Society of Genetic Counselors.

Entities:  

Keywords:  genetic counseling; genetic testing; return of results; secondary finding

Mesh:

Year:  2020        PMID: 32453499      PMCID: PMC8008700          DOI: 10.1002/jgc4.1292

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  32 in total

1.  Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms.

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Journal:  Am J Med Genet A       Date:  2012-04-24       Impact factor: 2.802

Review 2.  Incidence of Second Primary Malignancies in Patients with Neuroendocrine Tumours.

Authors:  Ashley K Clift; Panagiotis Drymousis; Adil Al-Nahhas; Harpreet Wasan; John Martin; Sture Holm; Andrea Frilling
Journal:  Neuroendocrinology       Date:  2015-03-21       Impact factor: 4.914

3.  Reporting Incidental Findings in Clinical Whole Exome Sequencing: Incorporation of the 2013 ACMG Recommendations into Current Practices of Genetic Counseling.

Authors:  Lacey A Smith; Jessica Douglas; Alicia A Braxton; Kate Kramer
Journal:  J Genet Couns       Date:  2014-11-18       Impact factor: 2.537

4.  Views of nonmedical, health system professionals regarding the return of whole genome sequencing incidental findings.

Authors:  Kimberly A Strong; Kaija L Zusevics; David P Bick; Regan Veith
Journal:  WMJ       Date:  2014-10

5.  Experiences with obtaining informed consent for genomic sequencing.

Authors:  Barbara A Bernhardt; Myra I Roche; Denise L Perry; Sarah R Scollon; Ashley N Tomlinson; Debra Skinner
Journal:  Am J Med Genet A       Date:  2015-07-21       Impact factor: 2.802

6.  Informed consent for whole-genome sequencing studies in the clinical setting. Proposed recommendations on essential content and process.

Authors:  Carmen Ayuso; José M Millán; Marta Mancheño; Rafael Dal-Ré
Journal:  Eur J Hum Genet       Date:  2013-01-16       Impact factor: 4.246

7.  "I want to know what's in Pandora's Box": comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing.

Authors:  Anne Townsend; Shelin Adam; Patricia H Birch; Zoe Lohn; Francois Rousseau; Jan M Friedman
Journal:  Am J Med Genet A       Date:  2012-08-17       Impact factor: 2.802

8.  Models of consent to return of incidental findings in genomic research.

Authors:  Paul S Appelbaum; Erik Parens; Cameron R Waldman; Robert Klitzman; Abby Fyer; Josue Martinez; W Nicholson Price; Wendy K Chung
Journal:  Hastings Cent Rep       Date:  2014-06-11       Impact factor: 2.683

9.  A formal risk-benefit framework for genomic tests: facilitating the appropriate translation of genomics into clinical practice.

Authors:  David L Veenstra; Joshua A Roth; Louis P Garrison; Scott D Ramsey; Wylie Burke
Journal:  Genet Med       Date:  2010-11       Impact factor: 8.822

10.  Paternalism and the ACMG recommendations on genomic incidental findings: patients seen but not heard.

Authors:  Anne Townsend; Shelin Adam; Patricia H Birch; Jan M Friedman
Journal:  Genet Med       Date:  2013-09       Impact factor: 8.822

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  2 in total

1.  Exploring the use of a Comic for Education about Expanded Carrier Screening among a Diverse Group of Mothers.

Authors:  Erin Rothwell; Sydney Cheek-O'Donnell; Erin Johnson; Alena Wilson; Rebecca A Anderson; Jeffrey Botkin
Journal:  J Commun Healthc       Date:  2021-05-06

2.  A qualitative study among patients with an inherited retinal disease on the meaning of genomic unsolicited findings.

Authors:  Ignaas Devisch; Elfride De Baere; Marlies Saelaert; Heidi Mertes; Tania Moerenhout; Caroline Van Cauwenbergh; Bart P Leroy
Journal:  Sci Rep       Date:  2021-08-04       Impact factor: 4.379

  2 in total

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