Literature DB >> 28293859

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

Benjamin Derbez1, Antoine de Pauw2, Dominique Stoppa-Lyonnet2,3,4, Sandrine de Montgolfier5,6.   

Abstract

Disclosure of genetic information within families is one of the longstanding questions under scrutiny in the field of genetics. Most of the probands entrusted with family disclosure succeed in this task, but there are still many problematic cases where it proves difficult. How can professionals help probands disclose this information? What levers can they activate to foster the diffusion of genetic information within families? In the context of a new legal framework concerning this question in France, this paper offers a comprehensive view of the process of genetic counselling in a cancer genetics department. Based on an ethnographic study, it focuses on the interactions between professionals and probands during each step of the testing procedures in order to identify key times when the issue can be addressed. The results show that the question of family disclosure needs to be addressed before, during and after the test. Greater awareness of this continuum among professionals could help them foster family disclosure by supporting the probands at each stage of the testing procedure.

Entities:  

Keywords:  At-risk relatives; Ethnographical study; Family communication; Genetic counseling; Genetic results

Mesh:

Year:  2017        PMID: 28293859     DOI: 10.1007/s10689-017-9970-4

Source DB:  PubMed          Journal:  Fam Cancer        ISSN: 1389-9600            Impact factor:   2.375


  26 in total

1.  Benefit of prophylactic mastectomy for women with BRCA1 or BRCA2 mutations

Authors: 
Journal:  JAMA       Date:  2000-06-21       Impact factor: 56.272

Review 2.  Family communication about genetic risk: the little that is known.

Authors:  Brenda J Wilson; Karen Forrest; Edwin R van Teijlingen; Lorna McKee; Neva Haites; Eric Matthews; Sheila A Simpson
Journal:  Community Genet       Date:  2004

Review 3.  Communicating genetic risk information within families: a review.

Authors:  Mel Wiseman; Caroline Dancyger; Susan Michie
Journal:  Fam Cancer       Date:  2010-12       Impact factor: 2.375

4.  Genetic Test Results and Disclosure to Family Members: Qualitative Interviews of Healthcare Professionals' Perceptions of Ethical and Professional Issues in France.

Authors:  Diane D' Audiffret Van Haecke; Sandrine de Montgolfier
Journal:  J Genet Couns       Date:  2015-10-19       Impact factor: 2.537

Review 5.  What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research.

Authors:  Kim Chivers Seymour; Julia Addington-Hall; Anneke M Lucassen; Claire L Foster
Journal:  J Genet Couns       Date:  2010-04-09       Impact factor: 2.537

6.  Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists.

Authors:  Yrrah H Stol; Fred H Menko; Marjan J Westerman; Rien M J P A Janssens
Journal:  J Med Ethics       Date:  2010-07       Impact factor: 2.903

7.  Communicating cancer risk within an African context: experiences, disclosure patterns and uptake rates following genetic testing for Lynch syndrome.

Authors:  Zandrè Bruwer; Merle Futter; Raj Ramesar
Journal:  Patient Educ Couns       Date:  2013-02-28

8.  Israeli nurses and genetic information disclosure.

Authors:  Sivia Barnoy; Nili Tabak
Journal:  Nurs Ethics       Date:  2007-05       Impact factor: 2.874

Review 9.  Guidelines for disclosing genetic information to family members: from development to use.

Authors:  Béatrice Godard; Thierry Hurlimann; Martin Letendre; Nathalie Egalité
Journal:  Fam Cancer       Date:  2006       Impact factor: 2.375

10.  Informing relatives about their hereditary or familial cancer risk: study protocol for a randomized controlled trial.

Authors:  Eveline de Geus; Cora M Aalfs; Mathilde G E Verdam; Hanneke C J M de Haes; Ellen M A Smets
Journal:  Trials       Date:  2014-03-20       Impact factor: 2.279

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  6 in total

1.  The uptake of presymptomatic genetic testing in hereditary breast-ovarian cancer and Lynch syndrome: a systematic review of the literature and implications for clinical practice.

Authors:  Fred H Menko; Jacqueline A Ter Stege; Lizet E van der Kolk; Kiki N Jeanson; Winnie Schats; Daoud Ait Moha; Eveline M A Bleiker
Journal:  Fam Cancer       Date:  2019-01       Impact factor: 2.375

2.  Genetic diseases and information to relatives: practical and ethical issues for professionals after introduction of a legal framework in France.

Authors:  Diane d'Audiffret Van Haecke; Sandrine de Montgolfier
Journal:  Eur J Hum Genet       Date:  2018-02-27       Impact factor: 4.246

3.  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

4.  Healthcare professionals' responsibility for informing relatives at risk of hereditary disease.

Authors:  Kalle Grill; Anna Rosén
Journal:  J Med Ethics       Date:  2020-11-27       Impact factor: 2.903

5.  The Communication Chain of Genetic Risk: Analyses of Narrative Data Exploring Proband-Provider and Proband-Family Communication in Hereditary Breast and Ovarian Cancer.

Authors:  Carla Pedrazzani; Monica Aceti; Reka Schweighoffer; Andrea Kaiser-Grolimund; Nicole Bürki; Pierre O Chappuis; Rossella Graffeo; Christian Monnerat; Olivia Pagani; Manuela Rabaglio; Maria C Katapodi; Maria Caiata-Zufferey
Journal:  J Pers Med       Date:  2022-07-29

6.  Family genetic result communication in rare and undiagnosed disease communities: Understanding the practice.

Authors:  Courtney M Studwell; Emily G Kelley; Janet S Sinsheimer; Christina G S Palmer; Kimberly LeBlanc
Journal:  J Genet Couns       Date:  2020-10-27       Impact factor: 2.537

  6 in total

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