Abstract
Inconclusive genetic test results including screening recommendations for the breast cancer patients and their first-degree relatives are the most common outcomes of BRCA 1/2 testing. Patients themselves should communicate these results to their relatives. Our aim was to explore communication of breast cancer genetic counseling results with daughters and sisters over a long period of time. Breast cancer patients, who had received an inconclusive DNA test result 7–14 years earlier, completed a self-report questionnaire. Additionally, in-depth interviews were conducted and analysed thematically. Of the 93 respondents, 85 (91 %) considered themselves responsible for communicating genetic test results to relatives. In-depth interviews (n = 14) showed, that counselees wanted ‘to hand over’ their responsibilities to communicate the test results and screening recommendations to their sisters. Although most patients had informed their daughters and sisters about the genetic test results, usually little is spoken about genetic test results and screening recommendations once the duty of informing is completed. We recommend that, similar to the procedure for BRCA1/2-mutation carriers, a separate letter for first-degree relatives of patients with an inconclusive test result should be provided. In this way information about risks and screening recommendations can be verified by family members years after genetic testing has been completed.
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Acknowledgments
This study was funded by the Dutch Pink Ribbon Foundation (grant number 2010.WO14.C60).
Conflict of Interest
Jessica E. Baars, Margreet G. E. M. Ausems, Els van Riel, Marijke C. Kars, Eveline M. A. Bleiker declare that they have no conflict of interest.
Human Studies and Informed Consent
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Appendices
Appendix 1
Fig. 1
Flow chart of study participants. aCheck inclusion criteria: first GCT visit; information given in the final letter about risks and/or screening recommendations; having an inconclusive GCT result. bCheck eligibility interviews: having at least one unaffected adult daugther and/or sister, having receive screening recommendations from the counselor for their at-risk female first-degree relatives; having reported in the questionnaire that they had communicated the genetic test results to their daugther or sister
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Baars, J.E., Ausems, M.G.E.M., van Riel, E. et al. Communication Between Breast Cancer Patients Who Received Inconclusive Genetic Test Results and Their Daughters and Sisters Years After Testing. J Genet Counsel 25, 461–471 (2016). https://doi.org/10.1007/s10897-015-9889-6
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DOI: https://doi.org/10.1007/s10897-015-9889-6