Risk comprehension in individuals at increased familial risk of cancer is suboptimal and little is known about how risk is understood and managed by at-risk individuals who do not undergo genetic testing. We qualitatively studied these issues in 36 unaffected women from high-risk breast cancer families, including both women who had and had not undergone genetic testing. Data were collected through semi-structured interviews and data analysis was guided by Grounded Theory. Risk comprehension and risk management were largely influenced by the individual’s experience of coming from a high-risk family, with both tested and untested women relying heavily on their intuition. Although women’s cognitive understanding of their risk appeared generally accurate, this objective risk information was considered of secondary value. The findings could be used to guide the development and delivery of information about risk and risk management to genetically tested and untested individuals at increased risk of hereditary cancer.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Price excludes VAT (USA)
Tax calculation will be finalised during checkout.
Allan, G. (2003). A critique of using grounded theory as a research method. Electronic Journal of Business Research Methods, 2, 1–10.
Audrain, J., Schwartz, M. D., Lerman, C., Hughes, C., Peshkin, B. N., & Biesecker, B. B. (1997). Psychological distress in women seeking genetic counseling for breast-ovarian cancer risk: The contributions of personality and appraisal. Annals of Behavioral Medicine, 19, 370–377.
Bakos, A. D., Hutson, S. P., Loud, J. T., Peters, J. A., Giusti, R. M., & Greene, M. H. (2008). BRCA mutation-negative women from hereditary breast and ovarian cancer families: A qualitative study of the BRCA-negative experience. Health Expectations, 11, 220–231. doi:10.1111/j.1369-7625.2008.00494.x
Bennett, P., Wilkinson, C., Turner, J., Edwards, R. T., France, B., Griffin, G., et al. (2009). Factors associated with intrusive cancer-related worries in women undergoing cancer genetic risk assessment. Familial Cancer, 8, 159–165. doi:10.1007/s10689-008-9221-9
Biesecker, B. B. (2001). Goals of genetic counseling. Clinical Genetics, 60, 323–330.
Bjorvatn, C., Eide, G. E., Hanestad, B. R., Øyen, N., Havik, O. E., Carlsson, A., et al. (2007). Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. Journal of Genetic Counseling, 16, 211–222. doi:10.1007/s10897-006-9061-4
Bottorff, J. L., Ratner, P. A., Johnson, J. L., Lovato, C. Y., & Joab, S. A. (1998). Communicating cancer risk information: The challenges of uncertainty. Patient Education and Counseling, 33, 67–81. doi:10.1016/S0738-3991(97)00047-5
Bowen, G. A. (2008). Naturalistic inquiry and the saturation concept: A research note. Qualitative Research, 8, 137–152. doi:10.1177/1468794107085301
Brainerd, C. J., & Reyna, V. F. (1990). Gist is the grist: Fuzzy-trace theory and the new intuitionism. Developmental Review, 10, 3–47.
Brainerd, C. J., & Reyna, V. F. (2001). Fuzzy-trace theory: Dual processes in memory, reasoning and cognitive neuroscience. Advances in Child Development and Behavior, 28, 41–100.
Brainerd, C. J., & Reyna, V. F. (2002). Fuzzy-trace theory and false memory. Current Directions in Psychological Science, 11, 164–169.
Braithwaite, D., Emery, J., Walter, F., Prevost, A. T., & Sutton, S. (2004). Psychological impact of genetic counseling for familial cancer: A systematic review and meta-analysis. Journal of the National Cancer Institute, 96, 122–133. doi:10.1093/jnci/djh017
Butow, P., Lobb, E. A., Meiser, B., Barratt, A., & Tucker, K. M. (2003). Psychological outcomes and risk perception after genetic testing and counselling in breast cancer: A systematic review. Medical Journal of Australia, 178, 77–81.
Cameron, L. D., Sherman, K. A., Marteau, T. M., & Brown, P. M. (2009). Impact of genetic risk information and type of disease on perceived risk, anticipated affect, and expected consequences of genetic tests. Health Psychology, 28, 307–316. doi:10.1037/a0013947
Carlsson, C., & Nilbert, M. (2007). Living with hereditary non-polyposis colorectal cancer; experiences from and impact of genetic testing. Journal of Genetic Counseling, 16, 811–820. doi:10.1007/s10897-007-9117-0
Caruso, A., Vigna, C., Marozzo, B., Sega, F. M., Sperduti, I., Cognetti, F., et al. (2009). Subjective versus objective risk in genetic counseling for hereditary breast and/or ovarian cancers. Journal of Experimental & Clinical Cancer Research, 28, 157. doi:10.1186/1756-9966-28-157
Charmaz, K. (2003). Grounded theory: Objectivist and constructivist methods. In N. K. Denzin & Y. S. Lincoln (Eds.), Strategies of qualitative inquiry (pp. 249–291). London: Sage.
Croyle, R. T., Smith, K. R., Botkin, J. R., Baty, B. J., & Nash, J. (1997). Psychological responses to BRCA1 mutation testing: Preliminary findings. Health Psychology, 16, 63–72.
Dagan, E., & Goldblatt, H. (2009). The twilight zone between health and sickness: A qualitative exploration with asymptomatic BRCA1 and 2 mutation carriers. Women and Health, 49, 263–279.
Dawson, S.-J., Price, M. A., Jenkins, M. A., McKinley, J. M., Butow, P. N., McLachlan, S.-A., et al. (2008). Cancer risk management practices of noncarriers within BRCA1/2 mutation-positive families in the Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer. Journal of Clinical Oncology, 26, 225–232. doi:10.1200/jco.2007.11.0262
den Heijer, M., Vos, J., Seynaeve, C., Vanheusden, K., Duivenvoorden, H. J., Tilanus-Linthorst, M., et al. (2012). The impact of social and personal resources on psychological distress in women at risk for hereditary breast cancer. Psycho-Oncology, 21, 153–160. doi:10.1002/pon.1879
Dieng, M., Watts, C. G., Kasparian, N. A., Morton, R. L., Mann, G. J., & Cust, A. E. (2014). Improving subjective perception of personal cancer risk: Systematic review and meta-analysis of educational interventions for people with cancer or at high risk of cancer. Psycho-Oncology, 23, 613–625. doi:10.1002/pon.3476
Erblich, J., Bovbjerg, D. H., & Valdimarsdottir, H. B. (2000). Looking forward and back: Distress among women at familial risk for breast cancer. Annals of Behavioral Medicine, 22, 53–59. doi:10.1007/bf02895167
Ersig, A. L., Ayres, L., Hadley, D. W., & Koehly, L. M. (2010). Explanations of risk in families without identified mutations for hereditary nonpolyposis colorectal cancer. Journal of Nursing Scholarship, 42, 139–146. doi:10.1111/j.1547-5069.2010.01342.x
Etzioni, R., Urban, N., Ramsey, S., McIntosh, M., Schwartz, S., Reid, B., et al. (2003). The case for early detection. Nature Reviews Cancer, 3, 243–252. doi:10.1038/nrc1041
Evers-Kiebooms, G., Welkenhuysen, M., Claes, E., Decruyenaere, M., & Denayer, L. (2000). The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: Implications for multidisciplinary counselling and for genetic education. Social Science and Medicine, 51, 831–841.
Finlay, E., Stopfer, J. E., Burlingame, E., Evans, K. G., Nathanson, K. L., Weber, B. L., et al. (2008). Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genetic Testing, 12, 81–91. doi:10.1089/gte.2007.0037
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. London: Weidenfeld and Nicolson.
Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18, 59–82. doi:10.1177/1525822x05279903
Hallowell, N., Green, J. M., Statham, H., Murton, F., & Richards, M. P. M. (1997). Recall of numerical risk estimates and counsellees’ perceptions of the importance of risk information following genetic counselling for breast and ovarian cancer. Psychology, Health & Medicine, 2, 149–159. doi:10.1080/13548509708400572
Hay, J. L., McCaul, K. D., & Magnan, R. E. (2006). Does worry about breast cancer predict screening behaviors? A meta-analysis of the prospective evidence. Preventive Medicine, 42, 401–408. doi:10.1016/j.ypmed.2006.03.002
Horowitz, M. J., Wilner, N., & Alvarez, W. (1979). Impact of Event Scale: A measure of subjective stress. Psychosomatic Medicine, 41, 209–218.
Jacobsen, P. B., Valdimarsdottir, H. B., Brown, K. L., & Offit, K. (1997). Decision-making about genetic testing among women at familial risk for breast cancer. Psychosomatic Medicine, 59, 459–466.
Kash, K. M., Holland, J. C., Miller, D. G., & Osborne, M. P. (1995). Does anxiety interfere with adherence to screening behaviors in women at genetic risk for breast-cancer? Psychosomatics, 36, 176.
Katapodi, M. C., Lee, K. A., Facione, N. C., & Dodd, M. J. (2004). Predictors of perceived breast cancer risk and the relation between perceived risk and breast cancer screening: A meta-analytic review. Preventive Medicine, 38, 388–402.
Keogh, L. A., McClaren, B. J., Apicella, C., Hopper, J. L., & Australian Breast Cancer Family Study. (2011). How do women at increased, but unexplained, familial risk of breast cancer perceive and manage their risk? A qualitative interview study. Hereditary Cancer in Clinical Practice, 9, 7. doi:10.1186/1897-4287-9-7
Lau, C., & Suthers, G. (2011). BRCA testing for familial breast cancer. Australian Prescriber, 34, 49–51.
Lerman, C., Hughes, C., Trock, B. J., Myers, R. E., Main, D., Bonney, A., et al. (1999). Genetic testing in families with hereditary nonpolyposis colon cancer. Journal of the American Medical Association, 281, 1618–1622. doi:10.1001/JAMA.281.17.1618
Lerman, C., Lustbader, E., Rimer, B., Daly, M., Miller, S., Sands, C., et al. (1995). Effects of individualized breast-cancer risk counseling: A randomized trial. Journal of the National Cancer Institute, 87, 286–292. doi:10.1093/jnci/87.4.286
Lynch, H. T., Lemon, S. J., Durham, C., Tinley, S. T., Connolly, C., Lynch, J. F., et al. (1997). A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer, 79, 2219–2228.
McAllister, M. (2003). Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary non-polyposis colon cancer families offered genetic testing. Clinical Genetics, 64, 179–189. doi:10.1034/j.1399-0004.2003.00133.x
McGregor, B. A., Bowen, D. J., Ankerst, D. P., Andersen, M., Yasui, Y., & McTiernan, A. (2004). Optimism, perceived risk of breast cancer, and cancer worry among a community-based sample of women. Health Psychology, 23, 339–344.
McInerney-Leo, A., Hadley, D., Kase, R. G., Giambarresi, T. R., Struewing, J. P., & Biesecker, B. B. (2006). BRCA1/2 testing in hereditary breast and ovarian cancer families III: Risk perception and screening. American Journal of Medical Genetics Part A, 140A, 2198–2206. doi:10.1002/ajmg.a.31432
Meiser, B., Butow, P., Friedlander, M., Barratt, A., Schnieden, V., Watson, M., et al. (2002). Psychological impact of genetic testing in women from high-risk breast cancer families. European Journal of Cancer, 38, 2025–2031.
Meiser, B., Price, M. A., Butow, P. N., Karatas, J., Wilson, J., Heiniger, L., et al. (2013). Psychosocial factors and uptake of risk-reducing salpingo-oophorectomy in women at the Kathleen Cuningham Consortium for Research into Familial Breast Cancer. Familial Cancer, 12, 101–109.
Michie, S., Weinman, J., Miller, J., Collins, V., Halliday, J., & Marteau, T. (2002). Predictive genetic testing: High risk expectations in the face of low risk information. Journal of Behavioral Medicine, 25, 33–50. doi:10.1023/a:1013537701374
NBOCC. (2010). Advice about familial aspects of breast cancer and epithelial ovarian cancer: A guide for health professionals. Sydney: National Breast and Ovarian Cancer Centre.
Persson, E., Lindholm, E., Berndtsson, I., Lundstam, U., Hultén, L., & Carlsson, E. (2012). Experiences of living with increased risk of developing colorectal and gynaecological cancer in individuals with no identified gene mutation. Scandinavian Journal of Caring Sciences, 26, 20–27. doi:10.1111/j.1471-6712.2011.00898.x
Phillips, K. A., Butow, P. N., Stewart, A. E., Chang, J. H., Weideman, P. C., Price, M. A., et al. (2005). Predictors of participation in clinical and psychosocial follow-up of the kConFab breast cancer family cohort. Familial Cancer, 4, 105–113. doi:10.1007/s10689-004-6129-x
Pijpe, A., Andrieu, N., Easton, D. F., Kesminiene, A., Cardis, E., Nogues, C., et al. (2012). Exposure to diagnostic radiation and risk of breast cancer among carriers of BRCA1/2 mutations: Retrospective cohort study (GENE-RAD-RISK). British Medical Journal, 345, e5660. doi:10.1136/bmj.e5660
Pilarski, R. (2009). Risk perception among women at risk for hereditary breast and ovarian cancer. Journal of Genetic Counseling, 18, 303–312. doi:10.1007/s10897-009-9227-y
Price, M. A., Butow, P. N., Charles, M., Bullen, T., Meiser, B., McKinley, J. M., et al. (2010). Predictors of breast cancer screening behavior in women with a strong family history of the disease. Breast Cancer Research and Treatment, 124, 509–519. doi:10.1007/s10549-010-0868-1
Price, M. A., Butow, P. N., Lo, S. K., & Wilson, J. (2007). Predictors of cancer worry in unaffected women from high risk breast cancer families: Risk perception is not the primary issue. Journal of Genetic Counseling, 16, 635–644.
Price, M. A., Tennant, C. C., Butow, P. N., Smith, R. C., Kennedy, S. J., Kossoff, M. B., et al. (2001). The role of psychosocial factors in the development of breast carcinoma: Part II—Life event stressors, social support, defense style, and emotional control and their interactions. Cancer, 91, 686–697.
Rees, G., Fry, A., & Cull, A. (2001). A family history of breast cancer: Women’s experiences from a theoretical perspective. Social Science and Medicine, 52, 1433–1440.
Renner, B. (2004). Biased reasoning: Adaptive responses to health risk feedback. Personality and Psychological Bulletin, 30, 384–396.
Sanders, T., Campbell, R., Donovan, J., & Sharp, D. (2007). Narrative accounts of hereditary risk: Knowledge about family history, lay theories of disease, and “internal” and “external” causation. Qualitative Health Research, 17, 510–520. doi:10.1177/1049732306297882
Schwartz, M. D., Peshkin, B. N., Valdimarsdottir, H., Tercyak, K. P., & Taylor, K. L. (2005). Decision making and decision support for hereditary breast-ovarian cancer susceptibility. Health Psychology, 24, S78–S84. doi:10.1037/0278-6133.24.4.s78
Sharaf, R. N., Myer, P., Stave, C. D., Diamond, L. C., & Ladabaum, U. (2013). Uptake of genetic testing by relatives of Lynch Syndrome probands: A systematic review. Clinical Gastroenterology and Hepatology, 11, 1093–1100. doi:10.1016/j.cgh.2013.04.044
Shiloh, S., Drori, E., Orr-Urtreger, A., & Friedman, E. (2009). Being ‘at-risk’ for developing cancer: Cognitive representations and psychological outcomes. Journal of Behavioral Medicine, 32, 197–208. doi:10.1007/s10865-008-9178-z
Siegel, R., DeSantis, C., & Jemal, A. (2014). Colorectal cancer statistics, 2014. CA: A Cancer Journal for Clinicians, 64, 104–117. doi:10.3322/caac.21220
Sivell, S., Elwyn, G., Gaff, C., Clarke, A., Iredale, R., Shaw, C., et al. (2008). How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: Systematic review. Journal of Genetic Counseling, 17, 30–63. doi:10.1007/s10897-007-9132-1
Smerecnik, C. M. R., Mesters, I., Verweij, E., de Vries, N. K., & de Vries, H. (2009). A systematic review of the impact of genetic counseling on risk perception accuracy. Journal of Genetic Counseling, 18, 217–228. doi:10.1007/s10897-008-9210-z
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Techniques and procedures for developing grounded theory. California: Sage.
van Dijk, S., Otten, W., van Asperen, C. J., Timmermans, D. R. M., Tibben, A., Zoeteweij, M. W., et al. (2004). Feeling at risk: How women interpret their familial breast cancer risk. American Journal of Medical Genetics Part A, 131A, 42–49. doi:10.1002/ajmg.a.30322
van Dooren, S., Rijnsburger, A. J., Seynaeve, C., Duivenvoorden, H. J., Essink-Bot, M.-L., Tilanus-Linthorst, M. M. A., et al. (2004). Psychological distress in women at increased risk for breast cancer: The role of risk perception. European Journal of Cancer, 40, 2056–2063.
Vos, J., Menko, F., Jansen, A. M., van Asperen, C. J., Stiggelbout, A. M., & Tibben, A. (2011). A whisper-game perspective on the family communication of DNA-test results: A retrospective study on the communication process of BRCA1/2-test results between proband and relatives. Familial Cancer, 10, 87–96. doi:10.1007/s10689-010-9385-y
The authors are very grateful to the women who took part in the interviews. We would also like to thank Lisa Vaccaro and Belinda Rahman for their feedback on the interview protocol. 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 (which has received funding from the NHMRC, the National Breast Cancer Foundation, Cancer Australia, and the National Institute of Health (USA)) for their contributions to this resource, and the many families who contribute to kConFab. kConFab is supported by a grant from the National Breast Cancer Foundation, and previously by the National Health and Medical Research Council (NHMRC), the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia, and the Cancer Foundation of Western Australia. The kConFab Psychosocial study was funded by National Health and Medical Research Council (Project Grants 153824, 301930, 457316). Prof Phyllis Butow receives a senior principal research fellowship from the NHMRC.
Conflict of interest
Louise Heiniger, Phyllis N. Butow, Margaret Charles, Melanie A. Price declare that they have no conflict of interest.
Human and Animal Rights and Informed Consent
All procedures followed were in accordance with ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
kConFab Psychosocial Group on behalf of the kConFab Investigators. The members of the “kConFab Psychosocial Group on behalf of the kConFab Investigators” are listed in the “Appendix”.
The kConFab Psychosocial Group includes the following in addition to the authors listed in the author group: B Bennett, B Meiser and K Tucker, Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia. S-A McLachlan Department of Oncology and Department of Medicine, St Vincent’s Hospital, Melbourne, Australia; K-A Phillips, Division of Cancer Medicine, Peter MacCallum Cancer Centre, Melbourne, Australia; Department of Medicine, St Vincent’s Hospital, The University of Melbourne, Melbourne, Australia; Sir Peter MacCallum Department of Oncology, The University of Melbourne, Melbourne, Australia; School of Population and Global Health, The University of Melbourne, Melbourne, Australia; CC Tennant, Sydney Medical School (Northern), The University of Sydney, Sydney, Australia.
Rights and permissions
About this article
Cite this article
Heiniger, L., Butow, P.N., Charles, M. et al. Intuition versus cognition: a qualitative exploration of how women understand and manage their increased breast cancer risk. J Behav Med 38, 727–739 (2015). https://doi.org/10.1007/s10865-015-9632-7
- Familial risk
- Genetic testing
- Risk comprehension
- Risk perception