ArticleFamilial cancer2011
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.
Article in Familial cancer, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 1 of them a synthesis that pooled it.
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Who cites it
35 citing papers in PubMed, 1 synthesis or guideline pooled it, 55 citations in OpenAlex.
- Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review.Journal of genetic counseling · 2017Pooled it
- Patients' perceptions and practices of informing relatives: a qualitative study within a randomised trial on healthcare-assisted risk disclosure.European journal of human genetics : EJHG · 2024Trial
- Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.Journal of genetic counseling · 2016Trial
- Effects of a pre-visit educational website on information recall and needs fulfilment in breast cancer genetic counselling, a randomized controlled trial.Breast cancer research : BCR · 2012Trial
- A pre-visit tailored website enhances counselees' realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling.Familial cancer · 2012Trial
- Changes in life decisions and in emotions following genetic testing for cancer risk.BMC psychology · 2025Article
- Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant.Breast (Edinburgh, Scotland) · 2021Article
- ShareDNA: a smartphone app to facilitate family communication of genetic results.BMC medical genomics · 2021Article
- Healthcare professionals' responsibility for informing relatives at risk of hereditary disease.Journal of medical ethics · 2020Article
- Female family members lack understanding of indeterminate negative BRCA1/2 test results shared by probands.Journal of genetic counseling · 2019Article
- Psychosocial Effects of Multigene Panel Testing in the Context of Cancer Genomics.The Hastings Center report · 2019Article
- Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer: reactions and attitudes.Familial cancer · 2019Article
- Preferences for multigene panel testing for hereditary breast cancer risk among ethnically diverse BRCA-uninformative families.Journal of community genetics · 2018Article
- Quantifying family dissemination and identifying barriers to communication of risk information in Australian BRCA families.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Article
- Article
- Genetic Testing and Post-Testing Decision Making among BRCA-Positive Mutation Women: A Psychosocial Approach.Journal of genetic counseling · 2016Article
- Changes of Socio-demographic data of clients seeking genetic counseling for hereditary breast and ovarian cancer due to the "Angelina Jolie Effect".BMC cancer · 2016Article
- Breast Cancer Risk Perceptions among Relatives of Women with Uninformative Negative BRCA1/2 Test Results: The Moderating Effect of the Amount of Shared Information.Journal of genetic counseling · 2016Article
- The impact of an interventional counselling procedure in families with a BRCA1/2 gene mutation: efficacy and safety.Familial cancer · 2016Article
- Cardiovascular Cascade Genetic Testing: Exploring the Role of Direct Contact and Technology.Frontiers in cardiovascular medicine · 2016Review
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
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