An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations
- 279 Downloads
The responsibility for informing at-risk relatives of the availability of genetic testing for breast/ovarian cancer gene (BRCA1 or BRCA2) mutations currently falls on the probands. This study explored the support needs of individuals from families with identified BRCA1 or BRCA2 mutations when communicating about genetic risk and genetic testing with at-risk family members. Thirty-nine semi-structured telephone interviews were conducted with individuals from families with identified BRCA mutations. Interview responses were cross-tabulated by sample characteristics using the qualitative research analysis software NVivo8. The development of educational materials, which individuals could use when communicating the risks of carrying a BRCA gene mutation with their relatives, was identified as a specific need. Many participants expressed a preference for a staged approach, where relatives are notified of their increased risk and the availability of genetic testing risk either face-to-face or via a letter, with additional educational sources, including brief written information or access to a website, made available for those wishing to access more in-depth information. This research identified a need for the development of educational/informational resources to support individuals with identified breast/ovarian cancer mutations to communicate with their at-risk relatives about genetic risk and genetic testing availability.
KeywordsFamily communication Genetic testing Communication support Hereditary breast cancer BRCA1 BRCA2
We wish to thank Heather Thorne, Eveline Niedermayr, all the kConFab research nurses and staff, the heads and staff of the Family Cancer Clinics, and the Clinical Follow Up Study (funded by NHMRC grants 145684, 288704 and 454508) for their contributions to this resource, and the many families who contribute to kConFab. We would like to thank the participants in this study for sharing their experiences and Ursula Sansom-Daly for her efforts in data collection. kConFab is supported by grants from the National Breast Cancer Foundation, the National Health and Medical Research Council (NHMRC) and by the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia, and the Cancer Foundation of Western Australia. Claire Wakefield is supported by a Postdoctoral Training Fellowship from the National Health and Medical Research Council of Australia (ID 510421). Bettina Meiser is supported by a Career Development Award from The National Health and Medical Research Council of Australia (ID 350989).
- 25.Gaff C, Meiser B (2009) Supporting decisions in clinical genetics. In: Edwards A, Elwyn G (eds) Shared decision-making in health care: achieving evidence-based patient choice, 2nd edn. Oxford University Press, London, pp 353–362Google Scholar
- 26.Miles MB, Huberman AM (1994) Qualitative data analysis: an expanded sourcebook, 2nd edn. Sage, LondonGoogle Scholar
- 27.Patton M (1990) Qualitative evaluation and research method, 2nd edn. Sage, LondonGoogle Scholar
- 28.Denzin JM, Lincoln YS (eds) (1994) Handbook of qualitative research. Sage Publications, LondonGoogle Scholar