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An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations

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Abstract

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.

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Acknowledgments

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).

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Authors and Affiliations

  1. School of Medicine, University of New South Wales, Randwick, NSW, Australia

    Paboda Ratnayake

  2. Department of Medical Oncology, Psychosocial Research Group (PRG), Prince of Wales Hospital, Level 3, Dickinson Building, High Street, Randwick, NSW, 2031, Australia

    Paboda Ratnayake, Claire E. Wakefield & Bettina Meiser

  3. School of Women’s and Children’s Health, University of New South Wales, Randwick, NSW, Australia

    Claire E. Wakefield

  4. Prince of Wales Clinical School, University of New South Wales, Kensington, NSW, Australia

    Bettina Meiser

  5. SA Clinical Genetics Service, Women’s & Children’s Hospital, North Adelaide, SA, Australia

    Graeme Suthers

  6. SA Pathology, Women’s & Children’s Hospital, North Adelaide, SA, Australia

    Graeme Suthers

  7. Department of Paediatrics, University of Adelaide, Adelaide, SA, Australia

    Graeme Suthers

  8. Centre for Medical Psychology and Evidence-Based Decision-making (CeMPED), School of Psychology, The University of Sydney, Sydney, NSW, Australia

    Melanie A. Price

  9. Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Sydney, NSW, Australia

    Melanie A. Price

  10. Hereditary Cancer Clinic, Prince of Wales Hospital, Randwick, NSW, Australia

    Jessica Duffy & Kathy Tucker

Authors
  1. Paboda Ratnayake
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  2. Claire E. Wakefield
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  3. Bettina Meiser
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  4. Graeme Suthers
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  5. Melanie A. Price
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  6. Jessica Duffy
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  7. Kathy Tucker
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Consortia

The Kathleen Cuningham National Consortium for Research into Familial Breast Cancer

Corresponding author

Correspondence to Bettina Meiser.

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Ratnayake, P., Wakefield, C.E., Meiser, B. et al. An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations. Familial Cancer 10, 97–105 (2011). https://doi.org/10.1007/s10689-010-9383-0

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  • DOI: https://doi.org/10.1007/s10689-010-9383-0

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