Challenges in managing genetic cancer risk: a long-term qualitative study of unaffected women carrying BRCA1/BRCA2 mutations.

Details

Serval ID
serval:BIB_0A2191D079D8
Type
Article: article from journal or magazin.
Collection
Publications
Title
Challenges in managing genetic cancer risk: a long-term qualitative study of unaffected women carrying BRCA1/BRCA2 mutations.
Journal
Genetics In Medicine : Official Journal of the American College of Medical Genetics
Author(s)
Caiata-Zufferey M., Pagani O., Cina V., Membrez V., Taborelli M., Unger S., Murphy A., Monnerat C., Chappuis P.O.
ISSN
1530-0366 (Electronic)
ISSN-L
1098-3600
Publication state
Published
Issued date
2015
Peer-reviewed
Oui
Volume
17
Number
9
Pages
726-732
Language
english
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov'tPublication Status: ppublish
Abstract
PURPOSE: Women carrying BRCA1/BRCA2 germ-line mutations have an increased risk of developing breast/ovarian cancer. To minimize this risk, international guidelines recommend lifelong surveillance and preventive measures. This study explores the challenges that unaffected women genetically predisposed to breast/ovarian cancer face in managing their risk over time and the psychosocial processes behind these challenges.
METHODS: Between 2011 and 2013, biographical qualitative interviews were conducted in Switzerland with 32 unaffected French- and Italian-speaking women carrying BRCA1/BRCA2 mutations. Their mutation status had been known for at least 3 years (mean, 6 years). Data were analyzed through constant comparative analysis using software for qualitative analysis.
RESULTS: From the time these women received their positive genetic test results, they were encouraged to follow medical guidelines. Meanwhile, their adherence to these guidelines was constantly questioned by their social and medical environments. As a result of these contradictory pressures, BRCA1/BRCA2 mutation carriers experienced a sense of disorientation about the most appropriate way of dealing with genetic risk.
CONCLUSION: Given the contradictory attitudes of health-care professionals in caring for unaffected BRCA1/BRCA2 mutation carriers, there is an urgent need to educate physicians in dealing with genetically at-risk women and to promote a shared representation of this condition among them.Genet Med 17 9, 726-732.
Keywords
Adult, Attitude of Health Personnel, BRCA1 Protein/genetics, BRCA2 Protein/genetics, Breast Neoplasms/genetics, Breast Neoplasms/prevention & control, Female, Genes, BRCA1, Genes, BRCA2, Genetic Predisposition to Disease/psychology, Genetic Testing, Germ-Line Mutation, Guideline Adherence, Humans, Interview, Psychological, Longitudinal Studies, Middle Aged, Retrospective Studies, Risk Factors
Pubmed
Web of science
Open Access
Yes
Create date
18/10/2016 16:57
Last modification date
08/05/2019 14:11
Usage data