Literature DB >> 27761849

A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer.

Rowan Forbes Shepherd1,2,3, Tamara Kayali Browne4,5, Linda Warwick6.   

Abstract

Ethical issues arise for genetic counselors when a client fails to disclose a genetic diagnosis of hereditary disease to family: they must consider the rights of the individual client to privacy and confidentiality as well as the rights of the family to know their genetic risk. Although considerable work has addressed issues of non-disclosure from the client's perspective, there is a lack of qualitative research into how genetic counselors address this issue in practice. In this study, a qualitative approach was taken to investigate whether genetic counselors in Australia use a relational approach to encourage the disclosure of genetic information from hereditary breast and ovarian cancer (HBOC) clients among family members; and if so, how they use it. Semi-structured qualitative interviews were conducted with 16 genetic counselors from selected states across Australia. Data collection and analysis were guided by a basic iterative approach incorporating a hybrid methodology to thematic analysis. The findings provide indicative evidence of genetic counselors employing a relational approach in three escalating stages--covert, overt and authoritative--to encourage the disclosure of genetic information. The findings lend credence to the notion that genetic counselors envision a form of relational autonomy for their clients in the context of sharing genetic information, and they depart from individualistic conceptions of care/solely client-centered counseling when addressing the needs of other family members to know their genetic status.

Entities:  

Keywords:  Disclosure; Ethical duty; Familial responsibility; Genetic counseling practice and theory; Genetic information; Relational approach

Mesh:

Year:  2016        PMID: 27761849     DOI: 10.1007/s10897-016-0022-2

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


  36 in total

1.  Concern for families and individuals in clinical genetics.

Authors:  M Parker; A Lucassen
Journal:  J Med Ethics       Date:  2003-04       Impact factor: 2.903

2.  Genetic secrets and the family.

Authors:  D Bell; B Bennett
Journal:  Med Law Rev       Date:  2001       Impact factor: 1.267

3.  Facilitating family communication about predictive genetic testing: probands' perceptions.

Authors:  Clara L Gaff; Veronica Collins; Tiffany Symes; Jane Halliday
Journal:  J Genet Couns       Date:  2005-04       Impact factor: 2.537

4.  A new definition of Genetic Counseling: National Society of Genetic Counselors' Task Force report.

Authors:  Robert Resta; Barbara Bowles Biesecker; Robin L Bennett; Sandra Blum; Susan Estabrooks Hahn; Michelle N Strecker; Janet L Williams
Journal:  J Genet Couns       Date:  2006-04       Impact factor: 2.537

5.  Coming full circle: a reciprocal-engagement model of genetic counseling practice.

Authors:  Patricia McCarthy Veach; Dianne M Bartels; Bonnie S Leroy
Journal:  J Genet Couns       Date:  2007-10-13       Impact factor: 2.537

Review 6.  Communicating genetic information in families--a review of guidelines and position papers.

Authors:  Laura E Forrest; Martin B Delatycki; Loane Skene; MaryAnne Aitken
Journal:  Eur J Hum Genet       Date:  2007-03-28       Impact factor: 4.246

7.  Unpacking the blockers: understanding perceptions and social constraints of health communication in hereditary breast ovarian cancer (HBOC) susceptibility families.

Authors:  June A Peters; Regina Kenen; Lindsey M Hoskins; Laura M Koehly; Barry Graubard; Jennifer T Loud; Mark H Greene
Journal:  J Genet Couns       Date:  2011-05-06       Impact factor: 2.537

8.  Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium.

Authors:  D Ford; D F Easton; M Stratton; S Narod; D Goldgar; P Devilee; D T Bishop; B Weber; G Lenoir; J Chang-Claude; H Sobol; M D Teare; J Struewing; A Arason; S Scherneck; J Peto; T R Rebbeck; P Tonin; S Neuhausen; R Barkardottir; J Eyfjord; H Lynch; B A Ponder; S A Gayther; M Zelada-Hedman
Journal:  Am J Hum Genet       Date:  1998-03       Impact factor: 11.025

9.  Increased genetic counseling support improves communication of genetic information in families.

Authors:  Laura E Forrest; Jo Burke; Sonya Bacic; David J Amor
Journal:  Genet Med       Date:  2008-03       Impact factor: 8.822

10.  Improving family communication after a new genetic diagnosis: a randomised controlled trial of a genetic counselling intervention.

Authors:  Jan M Hodgson; Sylvia A Metcalfe; Maryanne Aitken; Susan M Donath; Clara L Gaff; Ingrid M Winship; Martin B Delatycki; Loane L C Skene; Belinda J McClaren; Jean L Paul; Jane L Halliday
Journal:  BMC Med Genet       Date:  2014-03-14       Impact factor: 2.103

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  5 in total

1.  Experience of Asian males communicating cardiac genetic risk within the family.

Authors:  Sylvia Kam; Yasmin Bylstra; Laura Forrest; Ivan Macciocca; Roger Foo
Journal:  J Community Genet       Date:  2018-01-08

2.  An ethical framework for genetic counseling in the genomic era.

Authors:  Leila Jamal; Will Schupmann; Benjamin E Berkman
Journal:  J Genet Couns       Date:  2019-12-19       Impact factor: 2.717

3.  "It would be so much easier": health system-led genetic risk notification-feasibility and acceptability of cascade screening in an integrated system.

Authors:  Nora B Henrikson; Paula R Blasi; Stephanie M Fullerton; Jane Grafton; Kathleen A Leppig; Gail P Jarvik; Eric B Larson
Journal:  J Community Genet       Date:  2019-03-06

4.  When to break the news and whose responsibility is it? A cross-sectional qualitative study of health professionals' views regarding disclosure of BRCA genetic cancer risk.

Authors:  Alison Luk Young; Phyllis N Butow; Katherine M Tucker; Claire E Wakefield; Emma Healey; Rachel Williams
Journal:  BMJ Open       Date:  2020-02-25       Impact factor: 2.692

5.  Residential Locale Is Associated with Disparities in Genetic Testing-Related Outcomes Among BRCA1/2-Positive Women.

Authors:  Kate E Dibble; Avonne E Connor
Journal:  J Racial Ethn Health Disparities       Date:  2022-02-17
  5 in total

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