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Research Article

Parental disclosure of positive BRCA1/2 mutation status to children 10 years after genetic testing

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Pages 756-766 | Received 16 Oct 2018, Accepted 13 Aug 2019, Published online: 11 Sep 2019

References

  • Article L1131-1-2 du Code de Santé publique.
  • Bouhnik, A. D., Fabre, R., Dorval, M., Mancini, J., Mouret-Fourme, E., Nogues, C., & Julian-Reynier, C. (2012). Development of a scale for assessing respondents’ perceptions of health research questionnaires (the REP-HQ Scale). J Clin Epidemiol, 65(10), 1098–1106.
  • Bradbury, A. R., Dignam, J. J., Ibe, C. N., Auh, S. L., Hlubocky, F. J., Cummings, S. A., … Daugherty, C. K. (2007). How often do BRCA mutation carriers tell their young children of the family’s risk for cancer? A study of parental disclosure of BRCA mutations to minors and young adults. J Clin Oncol, 25(24), 3705–3711.
  • Bradbury, A. R., Patrick-Miller, L., Egleston, B. L., Olopade, O. I., Daly, M. B., Moore, C. W., … Daugherty, C. K. (2012). When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response. Cancer, 118(13), 3417–3425.
  • d’Agincourt-Canning, L. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15(3), 231–247. Retrieved from: https://www.ncbi.nlm.nih.gov/pubmed/11700677
  • d’Agincourt-Canning, L. (2006). Genetic testing for hereditary breast and ovarian cancer: responsibility and choice. Qual Health Res, 16(1), 97–118.
  • Daly, P. A., Nolan, C., Green, A., Ormiston, W., Cody, N., McDevitt, T., … Barton, D. E. (2003). Predictive testing for BRCA1 and 2 mutations: a male contribution. Ann Oncol, 14(4), 549–553.
  • Dindia, K., & Allen, M. (1992). Sex differences in self-disclosure: a meta-analysis. Psychol Bull, 112(1), 106–124.
  • Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N., & Matthews, E. (2003). To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet, 64(4), 317–326.
  • Gaff, C. L., Clarke, A. J., Atkinson, P., Sivell, S., Elwyn, G., Iredale, R., … Edwards, A. (2007). Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet, 15(10), 999–1011.
  • Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., & Watson, M. (2005). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clin Genet, 67(6), 492–502.
  • Hamilton, R. J., Bowers, B. J., & Williams, J. K. (2005). Disclosing genetic test results to family members. J Nurs Scholarsh, 37(1), 18–24. Retrieved from: https://www.ncbi.nlm.nih.gov/pubmed/15813582
  • Julian-Reynier, C., Bouhnik, A. D., Mouret-Fourme, E., Gauthier-Villars, M., Berthet, P., Lasset, C., … Nogues, C. (2010). Time to prophylactic surgery in BRCA1/2 carriers depends on psychological and other characteristics. Genet Med, 12(12), 801–807.
  • Julian-Reynier, C., Eisinger, F., Chabal, F., Lasset, C., Nogues, C., Stoppa-Lyonnet, D., … Sobol, H. (2000). Disclosure to the family of breast/ovarian cancer genetic test results: patient’s willingness and associated factors. Am J Med Genet, 94(1), 13–18.
  • Julian-Reynier, C., Fabre, R., Coupier, I., Stoppa-Lyonnet, D., Lasset, C., Caron, O., … Nogues, C. (2012). BRCA1/2 carriers: their childbearing plans and theoretical intentions about having preimplantation genetic diagnosis and prenatal diagnosis. Genet Med, 14(5), 527–534.
  • Julian-Reynier, C., Resseguier, N., Bouhnik, A. D., Eisinger, F., Lasset, C., Fourme, E., & Nogues, C. (2015). Cigarette smoking in women after BRCA1/2 genetic test disclosure: a 5-year follow-up study of the GENEPSO PS cohort. Genet Med, 17(2), 117–124.
  • Julian-Reynier, C., Welkenhuysen, M., Hagoel, L., Decruyenaere, M., Hopwood, P., & Group, C. W. (2003). Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services. Eur J Hum Genet, 11(10), 725–736.
  • Knoppers, B. M., & Godard, B. (1998). Ethical and legal perspectives on inherited cancer susceptibility. In W. H. Foulkes (Ed.), Inherited susceptibility to cancer: clinical, predictive and ethical perspectives (pp. 30–45). Cambridge: Cambridge University Press.
  • Kuchenbaecker, K. B., Hopper, J. L., Barnes, D. R., Phillips, K. A., Mooij, T. M., Roos-Blom, M. J., … Olsson, H. (2017). Risks of breast, ovarian, and contralateral breast cancer for BRCA1 and BRCA2 mutation carriers. JAMA, 317(23), 2402–2416.
  • Maheu, C., Bouhnik, A. D., Nogues, C., Mouret-Fourme, E., Stoppa-Lyonnet, D., Lasset, C., … Julian-Reynier, C. (2014). Which factors predict proposal and uptake of psychological counselling after BRCA1/2 test result disclosure? Psychooncology, 23(4), 420–427.
  • Mancini, J., Le Cozannet, E., Bouhnik, A. D., Resseguier, N., Lasset, C., Mouret-Fourme, E., … Julian-Reynier, C. (2016). Disclosure of research results: a randomized study on GENEPSO-PS cohort participants. Health Expect, 19(5), 1023–1035.
  • Meiser, B. (2005). Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology, 14(12), 1060–1074.
  • Metcalfe, A., Coad, J., Plumridge, G. M., Gill, P., & Farndon, P. (2008). Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research. Eur J Hum Genet, 16(10), 1193–1200.
  • Nycum, G., Avard, D., & Knoppers, B. M. (2009). Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information. Eur J Hum Genet, 17(7), 872–880.
  • Patenaude, A. F., Dorval, M., DiGianni, L. S., Schneider, K. A., Chittenden, A., & Garber, J. E. (2006). Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. J Clin Oncol, 24(4), 700–706.
  • Richards, M., & Ponder, M. (1996). Lay understanding of genetics: a test of a hypothesis. J Med Genet, 33(12), 1032–1036.
  • Sharff, M. E., DeMarco, T. A., Mays, D., Peshkin, B. N., Valdimarsdottir, H. B., Garber, J. E., … Tercyak, K. P. (2012). Parenting through genetic uncertainty: themes in the disclosure of breast cancer risk information to children. Genet Test Mol Biomarkers, 16(5), 376–382.
  • Surbone, A. (2001). Ethical implications of genetic testing for breast cancer susceptibility. Crit Rev Oncol Hematol, 40(2), 149–157.
  • Tercyak, K. P., Hughes, C., Main, D., Snyder, C., Lynch, J. F., Lynch, H. T., & Lerman, C. (2001). Parental communication of BRCA1/2 genetic test results to children. Patient Educ Couns, 42(3), 213–224.
  • Tercyak, K. P., Mays, D., DeMarco, T. A., Peshkin, B. N., Valdimarsdottir, H. B., Schneider, K. A., … Patenaude, A. F. (2013). Decisional outcomes of maternal disclosure of BRCA1/2 genetic test results to children. Cancer Epidemiol Biomarkers Prev, 22(7), 1260–1266.
  • Tercyak, K. P., Peshkin, B. N., DeMarco, T. A., Brogan, B. M., & Lerman, C. (2002). Parent-child factors and their effect on communicating BRCA1/2 test results to children. Patient Educ Couns, 47(2), 145–153.
  • Wilson, B. J., Forrest, K., van Teijlingen, E. R., McKee, L., Haites, N., Matthews, E., & Simpson, S. A. (2004). Family communication about genetic risk: the little that is known. Community Genet, 7(1), 15–24.

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