Literature DB >> 22833230

Enhancing family communication about genetics: ethical and professional dilemmas.

Jan Hodgson1, Clara Gaff.   

Abstract

When a new genetic condition is diagnosed within a family, genetic counselors often describe a sense of responsibility towards other at risk family members to be appropriately informed about their status. Successful communication of genetic information in families is contingent on many factors. While a small number of probands directly state their intention not to inform their relatives, many who do intend to communicate this information appear to be unsuccessful for a wide range of reasons and may benefit from follow up support from a genetic counselor. Drawing on the reciprocal-engagement model (REM) of genetic counseling practice we explore how enhancing family communication about genetics raises a number of ethical and professional challenges for counselors-and describe how we resolved these. A subsequent manuscript will describe the counseling framework we have developed to enhance family communication about genetics.

Mesh:

Year:  2012        PMID: 22833230     DOI: 10.1007/s10897-012-9514-x

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


  24 in total

1.  "Respect for autonomy" in genetic counseling: an analysis and a proposal.

Authors:  Mary Terrell White
Journal:  J Genet Couns       Date:  1997-09       Impact factor: 2.537

2.  Confidentiality and serious harm in genetics - preserving the confidentiality of one patient and preventing harm to relatives.

Authors:  Anneke Lucassen; Michael Parker
Journal:  Eur J Hum Genet       Date:  2004-02       Impact factor: 4.246

Review 3.  Do conscious thoughts cause behavior?

Authors:  Roy F Baumeister; E J Masicampo; Kathleen D Vohs
Journal:  Annu Rev Psychol       Date:  2011       Impact factor: 24.137

4.  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

5.  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

6.  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 7.  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

8.  Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients.

Authors:  Karin Landsbergen; Chris Verhaak; Floor Kraaimaat; Nicoline Hoogerbrugge
Journal:  Fam Cancer       Date:  2005       Impact factor: 2.375

9.  The Genetic Counseling Outcome Scale: a new patient-reported outcome measure for clinical genetics services.

Authors:  M McAllister; A M Wood; G Dunn; S Shiloh; C Todd
Journal:  Clin Genet       Date:  2011-02-14       Impact factor: 4.438

10.  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

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  21 in total

Review 1.  How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.

Authors:  Álvaro Mendes; Milena Paneque; Liliana Sousa; Angus Clarke; Jorge Sequeiros
Journal:  Eur J Hum Genet       Date:  2015-08-12       Impact factor: 4.246

2.  Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics.

Authors:  Benjamin Derbez; Antoine de Pauw; Dominique Stoppa-Lyonnet; Sandrine de Montgolfier
Journal:  Fam Cancer       Date:  2017-07       Impact factor: 2.375

3.  A genetic counseling intervention to facilitate family communication about inherited conditions.

Authors:  Clara Gaff; Jan Hodgson
Journal:  J Genet Couns       Date:  2014-03-01       Impact factor: 2.537

4.  Disclosure to genetic relatives without consent - Australian genetic professionals' awareness of the health privacy law.

Authors:  Natalia Meggiolaro; Kristine Barlow-Stewart; Kate Dunlop; Ainsley J Newson; Jane Fleming
Journal:  BMC Med Ethics       Date:  2020-02-04       Impact factor: 2.652

5.  Counseling Close to Home: Genetic Counselors' Experiences with their own Family Members.

Authors:  Laura Rust; Hallee Adamsheck; Catherine A Reiser; Elizabeth M Petty
Journal:  J Genet Couns       Date:  2017-08-16       Impact factor: 2.537

6.  Discussions about predictive genetic testing for Lynch syndrome: the role of health professionals and families in decisions to decline.

Authors:  Anaita Kanga-Parabia; Clara Gaff; Louisa Flander; Mark Jenkins; Louise A Keogh
Journal:  Fam Cancer       Date:  2018-10       Impact factor: 2.375

7.  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

8.  Outcomes of a randomised controlled trial of a complex genetic counselling intervention to improve family communication.

Authors:  Jan Hodgson; Sylvia Metcalfe; Clara Gaff; Susan Donath; Martin B Delatycki; Ingrid Winship; Loane Skene; MaryAnne Aitken; Jane Halliday
Journal:  Eur J Hum Genet       Date:  2015-07-01       Impact factor: 4.246

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

Authors:  Rowan Forbes Shepherd; Tamara Kayali Browne; Linda Warwick
Journal:  J Genet Couns       Date:  2016-10-19       Impact factor: 2.537

10.  Family communication in a population at risk for hypertrophic cardiomyopathy.

Authors:  Brittany Batte; Jane P Sheldon; Patricia Arscott; Darcy J Huismann; Lisa Salberg; Sharlene M Day; Beverly M Yashar
Journal:  J Genet Couns       Date:  2014-10-12       Impact factor: 2.537

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