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On the development of a decision support intervention for mothers undergoing BRCA1/2 cancer genetic testing regarding communicating test results to their children

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Abstract

Parent communication of BRCA1/2 test results to minor-age children is an important, yet understudied, clinical issue that is commonly raised in the management of familial cancer risk. Genetic counseling professionals and others who work with parents undergoing this form of testing often confront questions about the risks/benefits and timing of such disclosures, as well as the psychosocial impact of disclosure and nondisclosure on children’s health and development. This paper briefly reviews literature on the prevalence and outcome of parent–child communication surrounding maternal BRCA1/2 test results. It also describes a formative research process that was used to develop a decision support intervention for mothers participating in genetic counseling and testing for BRCA1/2 mutations to address this issue, and highlights the conceptual underpinnings that guided and informed the intervention’s development. The intervention consists of a print-based decision aid to facilitate parent education and counseling regarding if, when, and potentially how to disclose hereditary cancer risk information to children. We conclude with a summary of the role of social, behavioral, and decision science research to support the efforts of providers of familial cancer care regarding this important decision, and to improve the outcomes of cancer genetic testing for tested parents and their nontested children.

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Acknowledgments

Grant support was provided by the National Institutes of Health/National Human Genome Research Institute (R03HG003686 to B.N.P. and R01HG02686 to K.P.T.). The authors would like to thank the mothers and children who participated in this study. We are also grateful to the following individuals for their assistance: Kate Barasz, Karen Brown, Kristi Brown, Mary Daly, Rebecca Fisher, Kristi Graves, Lauren Grella, Michael Green, Heidi Hamilton, Chanita Hughes Halbert, Allyn McConkie-Rosell, Rachel Nusbaum, Jill Trimbath, Heiddis Valdimarsdottir, Erica Wahl, Jeanne Wagner, Leslie Walker, and Lara Wilson. We also thank Annette O’Connor of the Ottawa Health Research Institute and Mary McCullum for permission to use and adapt materials.

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Correspondence to Beth N. Peshkin.

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Peshkin, B.N., DeMarco, T.A. & Tercyak, K.P. On the development of a decision support intervention for mothers undergoing BRCA1/2 cancer genetic testing regarding communicating test results to their children. Familial Cancer 9, 89–97 (2010). https://doi.org/10.1007/s10689-009-9267-3

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  • DOI: https://doi.org/10.1007/s10689-009-9267-3

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