Family Communication Following BRCA1/2 Genetic Testing: A Close Look at the Process |
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Authors: | Darquise Lafrenière Karine Bouchard Béatrice Godard Jacques Simard Michel Dorval |
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Institution: | 1. Programmes de bioéthique/Département de médecine sociale et préventive, Faculté de médecine, Université de Montréal, Montréal, Québec, Canada 2. Unité de recherche en santé des populations, Centre de recherche du CHU de Québec, H?pital du Saint-Sacrement, Québec, Québec, Canada 3. Centre des maladies du sein Deschênes-Fabia, CHU de Québec, H?pital du Saint-Sacrement, Québec, Canada 4. Département de médecine moléculaire, Faculté de médecine, Université Laval, Québec, Canada 5. Laboratoire de génomique des cancers, Centre de recherche du CHU de Québec, CHUL, Québec, Canada 6. Faculté de pharmacie, Université Laval, Québec, Canada
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Abstract: | 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. |
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