title: Communicating BRCA1/2 genetic test results within the family: a qualitative analysis.
abstract: Genetic testing for BRCA1/2 mutations associated with hereditary breast and ovarian cancer reveals significant risk information about one's chances of developing cancer. It is important to study communication processes in families where members are undergoing genetic testing because the information received is crucial not just to the individual concerned but also to other members of the biological family. This study investigates family communication of BRCA1/2 test results from both the informants' and recipients' perspectives. A total of 10 female patients and 22 of their relatives were interviewed. Patients' and their relatives described feelings of responsibility for sharing genetic information within the family to enable others to reduce their risks of developing cancer. However, there were limits to an individuals' responsibility once key family members had been informed, who then had to take responsibility for continuing dissemination of information. Whilst there was an implicit responsibility to inform the family of a mutation, information was edited or withheld in the best interest of relatives, dependent upon their perceived emotional readiness, resilience and current life stage and circumstances. The pre-existing family culture and the impact previous cancer diagnoses had upon the family also influenced the process of communication. Findings are discussed in relation to extant literature and implications for clinical practice are considered.
authors.affiliation: Research Department of Clinical, Educational and Health Psychology, University College London, London WC1E7HB, UK. c.dancyger@ucl.ac.uk
authors.forename: Caroline
authors.initials: C
authors.lastname: Dancyger
authors.forename: Mel
authors.initials: M
authors.lastname: Wiseman
authors.forename: Chris
authors.initials: C
authors.lastname: Jacobs
authors.forename: Jonathan A
authors.initials: JA
authors.lastname: Smith
authors.forename: Melissa
authors.initials: M
authors.lastname: Wallace
authors.forename: Susan
authors.initials: S
authors.lastname: Michie
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics; D003142:Communication; D005190:Family; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics; D013222:State Medicine; D014342:Truth Disclosure; D006113:United Kingdom; D055815:Young Adult