Abstract
The responsibility of informing relatives that predictive genetic testing is available often falls to the proband. Support is required during this process, however the perceived utility of genetic counseling and other strategies to facilitate communication have not been explored. We investigated the experiences of 12 individuals with hereditary nonpolyposis colorectal cancer (HNPCC) in a semistructured telephone interview. Respondents informed their immediate family about the availability of genetic testing, however many more-distant relatives were not directly informed. Respondents were mostly satisfied with the way they told family members about testing and had mixed views about the usefulness of genetic counseling. Gender differences were observed, with most men expressing a need for guidance or support in communicating to relatives. Letters and booklets were thought to enhance the quality of information but the provision of further aids is unlikely to increase the number of relatives made aware of predictive testing by the proband.
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References
Benkendorf, J. L., Reutenauer, J. E., Hughes, C. A., Eads, N., Willison, J., Powers, M., & Lerman, C. (1997). Patients’ attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. Am J Med Genet, 73, 296–303.
Bonadona, V., Saltel, P., Desseigne, F., Mignotte, H., Saurin, J. C., Wang, Q., Sinilnikova, O., Giraud, S., Freyer, G., Plauchu, H., Puisieux, A., & Lasset, C. (2002). Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: Reactions and behavior after the disclosure of a positive test result. Cancer Epidemiol, Biom Preven, 11, 97–104.
Clayton, C., Hall, P., & Mackinnon, M. (1993). Family screening for genetic haemochromatosis. What is the most effective method of contact? Med J Aust, 159, 614–615.
d’Agincourt-Canning, L. (2001). Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics, 15, 231–247.
Dugan, R. B., Wiesner, G. L., Juengst, E. T., O’Riordan, M., Matthews, A. L., & Robin, N. H. (2003). Duty to warn at-risk relatives for genetic disease: Genetic counselors’ clinical experience. Am J Med Genet, 119C, 27–34.
Esplen, M., Madlensky, L., Butler, K., McKinnon, W., Bapat, B., Wong, J., Aronson, M., & Gallinger, S. (2001). Motivations and psychosocial impact of genetic testing for HNPCC. Am J Med Genet, 103, 9–15.
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, 317–326.
Green, J., Richards, M., Murton, F., Statham, H., & Hallowell, N. (1997). Family communication and genetic counseling: The case of hereditary breast and ovarian cancer. J Genet Couns, 6, 45–60.
Hughes, C., Lerman, C., Schwartz, M., Peshkin, B. N., Wenzel, L., Narod, S., Corio, C., Tercyak, K. P., Hanna, D., Isaacs, C., & Main, D. (2002). All in the family: Evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet, 107, 143–150.
Hughes, C., Lynch, H., Durham, C., Snyder, C., Lemon, S., Narod, S., Fulmore, C., Main, D., & Lerman, C. (1999). Communication of BRCA1/2 test results in hereditary breast cancer families. Cancer Res Ther Control, 8, 51–59.
Jarvinen, H., Aarnio, M., Mustonen, H., Aktan-Collan, K., Aaltonen, L., Peltomaki, P., de la Chapelle, A., & Mecklin, J. P. (2000). Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer. Gastroenterology, 118, 829–834.
Julian-Reynier, C., Eisinger, F., Chabal, F., Lasset, C., Nogues, C., Stoppa-Lyonnet, D., Vennin, P., & 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, 13–18.
Julian-Reynier, C., Eisinger, F., Vennin, P., Chabal, F., Aurran, Y., Nogues, C., Bignon, Y. J., Machelard-Roumagnac, M., Maugard-Louboutin, C., Serin, D., Blanc, B., Orsoni, P., & Sobol, H. H. (1996). Attitudes towards cancer predictive testing and transmission of information to the family. J Med Genetics, 33, 731–736.
Kerzin-Storrar, L., Wright, C., Williamson, P. R., Fryer, A., Njindou, A., Quarrell, O., Donnai, D., & Craufurd, D. (2002). Comparison of genetic services with and without genetic registers: Access and attitudes to genetic counselling services among relatives of genetic clinic patients. J Med Genet, 39, e85.
Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K., Vernon, S. W., & Gritz, E. R. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epid Biom Prev, 12, 304–313.
Lehmann, L. S., Weeks, J. C., Klar, N., Biener, L., & Garber, J. E. (2000). Disclosure of familial genetic information: Perceptions of the duty to inform. Am J Med, 109 705–711.
Lerman, C., Peshkin, B., Hughes, C., & Isaacs, C. (1998). Family disclosure in genetic testing for cancer susceptibility: Determinants and consequences. J Health Care Law Policy, 1, 353–372.
McAllister, M. (1999). Predictive Testing for Hereditary Non-Polyposis Colorectal Cancer (HNPCC): A Theory of Engagement. Phd thesis, Cambridge University, Cambridge.
McAllister, M. F., Evans, D. G., Ormiston, W., & Daly, P. (1998). Men in breast cancer families: A preliminary qualitative study of awareness and experience. J Med Genet, 35, 739–744.
McConkie-Rosell, A., Robinson, H., Wake, S., Staley, L. W., Heller, K., & Cronister, A. (1995). Dissemination of genetic risk information to relatives in the fragile X syndrome: Guidelines for genetic counselors. Am J Med Genet, 59, 426–430.
Peterson, S. K., Watts, B. G., Koehly, L. M., Vernon, S. W., Baile, W. F., Kohlmann, W. K., & Gritz, E. R. (2003). How families communicate about HNPCC genetic testing: Findings from a qualitative study. Am J Med Genet, 119C, 78–86.
Richards, M. (1996). Families, kinship and genetics. In R. M. Marteau T (Ed.), The Troubled helix: Social and psychological implications of the new human genetics (pp. 249–273). New York: Cambridge University Press.
Skirton, H. (1998). Telling the Children. In A. Clarke (Ed.), The Genetic Testing of Children (pp. 103–111). Oxford: BIOS Scientific Publishers.
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory, procedures and techniques. Newbury Park: Sage Publications.
The Cancer Council Victoria. (2003). Hereditary non-polyposis colorectal cancer: Information for families. Melbourne.
Trepanier, A., Ahrens, M., McKinnon, W., Peters, J., Stopfer, J., Campbell Grumet, S., Manley, S., Culver, J. O., Acton, R., Larsen-Haidle, J., Correia, L., Bennett, R. L., Pettersen, B., Diamond Ferlita, T., Wagner Costalas, J., Hunt, K., Donlon, S., Skrzynia, C., Farrell, C., Callif-Daley, F., & Walsh Vockley, C. (2004). Genetic cancer risk assessment and counseling: Recommendations of the National Society of Genetic Counselors. J. Genet Couns, 13, 83–114.
Varekamp, I., Suurmeijer, T., Brocker-Vriends, A., & Rosendaal, F. R. (1992). Hemophilia and the use of genetic counseling and carrier testing within family networks. Birth Defects Orig Artic Ser, 28, 139–148.
Wilcke, J., Seersholm, N., Kok-Jensen, A., & Dirkson, A. (1999). Transmitting genetic risk information in families: Attitudes about disclosing the identity of relatives. Am J Hum Genet, 65, 902–909.
Wilcke, J. T. (1998). Late onset genetic disease: Where ignorance is bliss, is it folly to inform relatives? BMJ, 317, 744–747.
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Gaff, C.L., Collins, V., Symes, T. et al. Facilitating Family Communication About Predictive Genetic Testing: Probands’ Perceptions. J Genet Counsel 14, 133–140 (2005). https://doi.org/10.1007/s10897-005-0412-3
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DOI: https://doi.org/10.1007/s10897-005-0412-3