title: Predictive Genetic Testing and Alternatives to Face to Face Results Disclosure: A Retrospective Review of Patients Preference for Alternative Modes of BRCA 1 and 2 Results Disclosure in the Republic of Ireland.
abstract: The traditional model of providing cancer predictive testing services is changing. Many genetic centres are now offering a choice to patients in how they receive their results instead of the typical face-to-face disclosure. In view of this shift in practice and the increasing demand on the ROI cancer predictive testing service, a 2 year retrospective study on patient preference in how to receive a Breast Cancer (BRCA) predictive result was carried out. Results showed that 71.7 % of respondents would have liked to have the option of obtaining their results by telephone or by letter. However, when asked about their actual experience of BRCA predictive results disclosure 40.6 % did still value the face-to-face contact, while 44.9 % would still have preferred to receive results by either post or telephone. No significant difference was found between males and females (p > 0.05) and those who tested negative or positive for the BRCA mutation (p > 0.05) in wanting a choice in how their results were disclosed. While the majority expressed a wish to have a choice in how to receive their results, it is important not to underestimate the value of a face-to-face encounter in these circumstances.
authors.affiliation: Department of Clinical Genetics, Our Lady's Hospital for Children, Dublin, Ireland. rosieoshea92@yahoo.com.
authors.forename: Rosie
authors.initials: R
authors.lastname: O'Shea
authors.affiliation: Department of Clinical Genetics, Our Lady's Hospital for Children, Dublin, Ireland.
authors.forename: Marie
authors.initials: M
authors.lastname: Meany
authors.affiliation: Department of Clinical Genetics, Our Lady's Hospital for Children, Dublin, Ireland.
authors.forename: Cliona
authors.initials: C
authors.lastname: Carroll
authors.affiliation: Department of Clinical Genetics, Our Lady's Hospital for Children, Dublin, Ireland.
authors.forename: Nuala
authors.initials: N
authors.lastname: Cody
authors.affiliation: Department of Clinical Genetics, Our Lady's Hospital for Children, Dublin, Ireland.
authors.forename: David
authors.initials: D
authors.lastname: Healy
authors.affiliation: Department of Clinical Genetics, Our Lady's Hospital for Children, Dublin, Ireland.
authors.forename: Andrew
authors.initials: A
authors.lastname: Green
authors.affiliation: Department of Clinical Genetics, Our Lady's Hospital for Children, Dublin, Ireland.
authors.forename: Sally Ann
authors.initials: SA
authors.lastname: Lynch
mesh_terms: D001943:Breast Neoplasms / Q000235:genetics*; D030881:Disclosure; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D007494:Ireland; D008297:Male; D009154:Mutation; D057240:Patient Preference; D012189:Retrospective Studies; D011795:Surveys and Questionnaires
keywords: Alternative; BRCA predictive; Results disclosure