Family Communication Following BRCA1/2 Genetic Testing: A Close Look at the Process

This study examines the process of communicating BRCA1/2 genetic test results to family members, and the factors influencing disclosure. Twenty-nine semi-structured telephone interviews with BRCA1/2 tested individuals, 4 to 9 years post-notification, were conducted. Our results suggest that individu...

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Bibliographic Details
Published in:Journal of genetic counseling 2013-06, Vol.22 (3), p.323-335
Main Authors: Lafrenière, Darquise, Bouchard, Karine, Godard, Béatrice, Simard, Jacques, Dorval, Michel
Format: Article
Language:English
Subjects:
Adult
Aged
Biomedical and Life Sciences
Biomedicine
BRCA1
BRCA2
Breast cancer
Clinical Psychology
Communication
Disclosure
Ethics
Family
Family medical history
Female
Genes
Genes, BRCA1
Genes, BRCA2
Genetic counseling
Genetic predisposition to disease
Genetic screening
Genetic Testing
Gynecology
Human Genetics
Humans
Male
Middle Aged
Original Research
Ovarian cancer
Psychosocial factors
Public Health
Relatives
Telephones
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Summary:This study examines the process of communicating BRCA1/2 genetic test results to family members, and the factors influencing disclosure. Twenty-nine semi-structured telephone interviews with BRCA1/2 tested individuals, 4 to 9 years post-notification, were conducted. Our results suggest that individual, familial, relational and socio-medical factors influence the decision to disclose/not disclose genetic test results to family members. These factors are at play in all three communication phases: the Decision-making phase, in which the individual ponders various factors before deciding to disclose test results to family members; the Disclosure phase, in which communication per se takes place; and the Reaction phase, which shapes the participant’s subsequent disclosure/non-disclosure decisions. We propose a guiding framework to assist in identifying and evaluating significant factors that might shape the course and outcome of the transmission of genetic information to family members.
ISSN:1059-7700
1573-3599
DOI:10.1007/s10897-012-9559-x