caa a22 4500 445330570 CHVBK 20180317142735.0 cr unu---uuuuu 170323e20110301xx s 000 0 eng 10.1007/s10689-010-9385-y doi (NATIONALLICENCE)springer-10.1007/s10689-010-9385-y A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives [Elektronische Daten] [Joël Vos, Fred Menko, Anna Jansen, Christi van Asperen, Anne Stiggelbout, Aad Tibben] Objective of this paper is to study how DNA-test result information was communicated and perceived within families. A retrospective descriptive study in 13 probands with a BRCA1/2 unclassified variant, 7 with a pathogenic mutation, 5 with an uninformative result, and in 44, 14, and 12 of their 1st and 2nd degree relatives respectively. We examined differences and correlations between: (a) information actually communicated (b) probands' perception, (c) relatives' perception. The perception consisted of recollections and interpretations of both their own and their relatives' cancer-risks, and heredity-likelihood (i.e. likelihood that cancer is heritable in the family). Differences and low correlations suggested few similarities between the actually communicated information, the probands' and the relatives' perception. More specifically, probands recalled the communicated information differently compared with the actually communicated information (R=.40), and reinterpreted this information differently (R=.30). The relatives' perception was best correlated with the proband's interpretation (R=.08), but this perception differed significantly from their proband's perception. Finally, relatives reinterpreted the information they received from their proband differently (R=.25), and this interpretation was only slightly related with the original message communicated by the genetic-counsellor (R=.15). Unclassified-variants were most frequently misinterpreted by probands and relatives, and had the largest differences between probands' and relatives' perceptions. Like in a children's whisper-game, many errors occur in the transmission of DNA-test result information in families. More attention is required for how probands disseminate information to relatives. Genetic-counsellors may help by supporting the probands in communicating to relatives, e.g. by providing clear summary letters for relatives. The Author(s), 2010 BRCA1/2 nationallicence Oncology nationallicence Psychology nationallicence Genetic-counselling nationallicence Familytherapy nationallicence Risk-perception nationallicence Vos Joël Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands aut Menko Fred Department of Clinical Genetics, VU University Medical Center, Amsterdam, The Netherlands aut Jansen Anna Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands aut van Asperen Christi Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands aut Stiggelbout Anne Department of Medical Decision-Making, Leiden University Medical Center, Leiden, The Netherlands aut Tibben Aad Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands aut Familial Cancer Springer Netherlands 10/1(2011-03-01), 87-96 1389-9600 10:1<87 2011 10 10689 https://doi.org/10.1007/s10689-010-9385-y text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s10689-010-9385-y text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Vos Joël Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands aut NATIONALLICENCE 700 1- Menko Fred Department of Clinical Genetics, VU University Medical Center, Amsterdam, The Netherlands aut NATIONALLICENCE 700 1- Jansen Anna Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands aut NATIONALLICENCE 700 1- van Asperen Christi Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands aut NATIONALLICENCE 700 1- Stiggelbout Anne Department of Medical Decision-Making, Leiden University Medical Center, Leiden, The Netherlands aut NATIONALLICENCE 700 1- Tibben Aad Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, The Netherlands aut NATIONALLICENCE 773 0- Familial Cancer Springer Netherlands 10/1(2011-03-01), 87-96 1389-9600 10:1<87 2011 10 10689 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer