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

Lafrenière D, Bouchard K, Godard B, Simard J, Dorval M.

Source

Programmes de bioéthique/Département de médecine sociale et préventive, Faculté de médecine, Université de Montréal, Montréal, Québec, Canada.

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.