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The Effect of Experiential Knowledge on Construction of Risk Perception in Hereditary Breast/Ovarian Cancer

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Journal of Genetic Counseling

Abstract

The purpose of this study was to explore the connection between experiential knowledge of hereditary breast/ovarian cancer and understandings of personal cancer risk. Using a qualitative research design, the investigator conducted in-depth interviews with 53 individuals (45 female, 8 male) from families at high-risk for hereditary breast/ovarian cancer. Study results showed that two forms of experiential knowledge, empathetic and embodied knowledge, were integral to participants’ constructions of their cancer risk. They also illustrated that knowledge derived from experience often took precedence over objective clinical estimates of risk. The paper discusses the clinical implications of these findings and suggests that counseling strategies, which expand upon patient’s lived experience and knowledge of the disease, may enhance communication of genetic risk. Assessment of experiential knowledge promises to suggest new ways to frame genetic information that will enable people to better understand their objective risk or to modify exaggerated and/or inaccurate risk perceptions.

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References

  • Abel, E. K., & Browner, C. H. (1998). Selective compliance with biomedical authority and the uses of experiential knowledge. In M. Lock & P. A. Kaufert (Eds.), Pragmatic women and body politics (pp. 310–326). Cambridge: Cambridge University Press.

    Google Scholar 

  • Babbit, S. (1993). Feminism and objectives interests: The role of transformation experiences in rational deliberation. In L. Alcoff & E. Potter (Eds.), Feminist epistemologies (pp. 245–263). New York: Routledge.

    Google Scholar 

  • Baider, L., & De-Nour, A. K. (2000). Cancer and couples-its impact on the healthy partner: Methodological considerations. In L. Baider, C. Cooper, & A. K. De-Nour (Eds.), Cancer and the family, (2nd ed., pp. 41–52). New York: Wiley.

    Google Scholar 

  • Baider, Ever-Hadani, P., & DeNour, A. K. (1999). Psychological distress in health women with familial breast cancer: Like mother, like daughter? Inter J Psych Med, 29(4), 411–420.

    Google Scholar 

  • Beeson, D., & Doksum, T. (2001). Family values and resistance to genetic testing. In B. Hoffmaster (Ed.), Bioethics in social context (pp. 153–179). Philadelphia: Temple University Press.

    Google Scholar 

  • Bernhardt, B., Geller, G., Strauss, M., Helzlouer, K., Stefanek, M., Wilcox, P., et al. (1997). Toward a model of informed consent process for BRCA1 testing: A qualitative assessment of women’s attitudes. J Genet Couns, 6, 207–222.

    Google Scholar 

  • Biesecker, B. (1997). Psychological issues in cancer genetics. Sem Oncol Nurs, 13(2), 129–134.

    Google Scholar 

  • Blandy, C., Chabal, F., Stoppa-Lyonnet, D., & Julian-Reynier, C. (2003). Testing participation in BRCA1/2 positive families: Initiator role of index cases. Genet Testing, 7(3), 225–233.

    Google Scholar 

  • Bottorff, J. L., Ratner, P. A., Johnson, J. L., Lovato, C. Y., & Joab, S. A. (1998). Communicating cancer risk information: The challenges of uncertainty. Pat Educ Couns, 33(1), 67–81.

    Google Scholar 

  • Braithwaite, D., Emery, H., Walter, F., Prevost, A., & Sutton, S. (2004). Psychological impact of genetic counseling for familial cancer: A systematic review and meta-analysis. J Nat Can Inst, 96(2), 122–133.

    Google Scholar 

  • British Columbia Ministry of Education (1989). Year 2000: A curriculum and assessment framework for the future. Province of British Columbia.

  • British Columbia Ministry of Education (1990). Year 2000: A Framework for Learning. Province of British Columbia.

  • Britzman, D. (1991). Practice makes practice: A critical study of learning to teach. Albany: State University of New York Press.

    Google Scholar 

  • Chalmers, K., & Thomson, K. (1996). Coming to terms with the risk of breast cancer: Perceptions of women with primary relatives with breast cancer. Qual Health Res, 6(2), 256–282.

    Google Scholar 

  • Chalmers, K., Thomson, K., & Degner, L. F. (1996). Information, support, and communication needs of women with a family history of breast cancer. Can Nurs, 19(3), 204–213.

    Google Scholar 

  • Code, L. (1991). What can she know? Feminist theory and the construction of knowledge. Ithaca: Cornell University Press.

    Google Scholar 

  • Code, L. (1993). Taking subjectivity into account. In L. Alcoff & E. Potter (Eds.), Feminist epistemologies (pp. 15–48). New York: Routledge.

    Google Scholar 

  • Cull, A., Anderson, E., Campbell, S., MacKay, J., Smyth, E., & Steel, M. (1999). The impact of genetic counseling about breast cancer risk on women’s risk perceptions and levels of distress. Br J Cancer, 79, 501–508.

    Google Scholar 

  • d’Agincourt-Canning, L. (2003). Experiential knowledge, moral agency and genetic testing for hereditary breast/ovarian cancer. Unpublished Ph.D. Dissertation, University of British Columbia.

  • Dalmiya, V., & Alcoff, L. (1993). Are “Old Wives’ Tales” Justified? In L. Alcoff and E. Potter (Eds.), Feminist epistemologies (pp. 217–244). New York: Routledge.

    Google Scholar 

  • Emerson, R., Fretz, R., & Shaw. (1995). Writing ethnographic fieldnotes Chicago: University of Chicago Press.

    Google Scholar 

  • Erblich, J., Bovbjerg, D. H., & Valdimarsdottir, H. B. (2000). Looking forward and back: Distress among women at familial risk for breast cancer. Ann Behav Med, 22, 53–59.

    Google Scholar 

  • Evans, D. G. R., Blair, V., Greehalg, R., Hopwood, P., & Howell, A. (1994). The impact of genetic counseling on risk perception in women with a family history of breast cancer. Br J Cancer, 70, 934–938.

    Google Scholar 

  • Evans, D. G. R., Brunell, L. D., Hopwood, P., & Howell, A. (1993). Perception of risk in women with a family history of cancer. Br J Cancer, 67, 612–614.

    Google Scholar 

  • Geller, G., Bernhardt, B., Helzlouer, K., Holtzman, N., Stefanek, M., & Wilcox, P. (1995). Informed consent and BRCA1 testing. Nat Genet, 11, 364.

    Google Scholar 

  • Geller, G., Strauss, M., Bernhardt, B., & Holtzman, N. (1997). Decoding informed consent: Insights from women regarding breast cancer susceptibility testing. Hastings Cen Rep, 27(2), 28–33.

    Google Scholar 

  • Good, B. (1994). Medicine, rationality and experience: An anthropological perspective Cambridge: Cambridge University Press.

    Google Scholar 

  • Hailey, B., Carter, C. L., & Burnett, D. (2000). Breast cancer attitudes, knowledge and screening behavior in women with and without a family history of breast cancer. Health Care Women Int, 21, 701–715.

    Google Scholar 

  • Hallowell, N., Stratham, H., & Murton, F. (1998). Women’s understanding of their risk of developing breast/ovarian cancer before and after genetic counseling. J Genet Couns, 7, 345–364.

    Google Scholar 

  • Hammersley, M., & Atkinson, P. (1995). Ethnography: Principles in practice. New York: Routledge.

    Google Scholar 

  • Harding, S. (1993). Rethinking standpoint epistemology: “What is strong objectivity?” In L. Alcoff & E. Potter (Eds.), Feminist epistemologies (pp. 49–82). New York: Routledge.

    Google Scholar 

  • Hopwood, P., Keeling, F., Long, A., Pool, C., Evans, G., & Howell, A. (1998). Psychological support needs for women at high genetic risk of breast cancer. Some preliminary indicators. Psychosoc Oncol, 7, 402–412.

    Google Scholar 

  • Hopwood, P., Shenton, A., Lalloo, F., Evans, D. G. R., & Howell, A. (2001). Risk perception and cancer worry: An explanatory study of the impact of genetic risk counseling in women with a family history of breast cancer. J Med Genet, 38, 139–142.

    Google Scholar 

  • Huberman, A., & Miles, M. (1994). Data management and data analysis methods. In N. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 428–444). Thousand Oaks, CA: Sage.

    Google Scholar 

  • Jacobs, L. (2000). An analysis of the concept of risk. Canc Nurs, 23, 12–19.

    Google Scholar 

  • Jacobsen, P., Valdimarsdottir, H., Brown, K. L., & Offit, K. (1997). Decision-making about genetic testing among women at familial risk for breast cancer. Psychosom Med, 59, 459–466.

    Google Scholar 

  • Julian-Reynier, C., Eisinger, F., Vennin, P., Chabal, F., Aurran, Y., Nogues, C., et al. (1996). Attitudes towards cancer predictive testing and transmission of information to the family. J Med Genet, 33, 731–736.

    Google Scholar 

  • Kahneman, D., & Tversky, A. (1979). Prospect theory: An analysis of decision under risk. Econometrica, 47, 262–290.

    Google Scholar 

  • Kash, K. M., Holland, J. C., Halper, M. S., & Miller, D. G. (1992). Psychological distress and surveillance behaviours of women with a family history of breast cancer. J Natl Cancer Inst, 84, 24–30.

    Google Scholar 

  • Kasper, A. S., & Ferguson, S. J. (Eds.). (2000). Breast cancer: Society shapes and epidemic. New York: St. Martin’s Press.

    Google Scholar 

  • Keller, E. F. (1985). Reflections on gender and science. New Haven: Yale University Press.

    Google Scholar 

  • Kenen, R., Audern-Jones, A., & Eeles, R. (2002). Family stories and the use of heuristics: Women from suspected hereditary breast and ovarian cancer families. Soc Health Illn, 25, 838–865.

    Google Scholar 

  • Kenen, R., Audern-Jones, A., & Eeles, R. (2004). We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer. Psychooncology, 13, 335–345.

    Article  PubMed  Google Scholar 

  • Lerman, C., Daly, M., Masny, A., & Balshem, A. (1994). Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol, 12, 843–850.

    Google Scholar 

  • Lerman, C., Day, M., Sands, C., Balshem, A., Lustbader, E., Heggen, T., et al. (1993). Mammography adherence and psychological distress among women at risk for breast cancer. J Natl Cancer Inst, 85, 1074–1080.

    Google Scholar 

  • 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. J Natl Cancer Inst, 87, 286-292.

    Google Scholar 

  • Lerman, C., Seay, J., Balshem, A., & Audrain, J. (1995). Interest in genetic testing among first degree relatives of breast cancer patients. Am J Med Genet, 57, 385–392.

    Google Scholar 

  • Lloyd, S., Watson, M., Waites, B., Meyer, L., Eeles, R., Ebbs, S., & Tylee, A. (1996). Familial breast cancer: A controlled study of risk perception, psychological morbidity and health beliefs in women attending genetic counseling. Br J Cancer, 74, 482-487.

    Google Scholar 

  • Lock, M., & Kaufert, P. (1998). Introduction. In M. Lock & P. Kaufert (Eds.), Pragmatic women and body politics (pp. 1–27). New York: Cambridge University Press.

    Google Scholar 

  • Marteau, T., & Lerman, C. (2001). Genetic risk and behavioural change. Br Med J, 322, 1056–1059.

    Google Scholar 

  • McAllister, M. (2002). Predictive genetic testing and beyond: A theory of engagement. J Health Psychol, 7, 491–508.

    Google Scholar 

  • McAllister, M. (2003). Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary non-polyposis colon cancer families offered genetic testing. Clin Genet, 64, 179–189.

    Google Scholar 

  • Murphy, A. (1999). Dealing with the uncertainty of developing a cancer. Euro J Cancer Care, 8, 233–237.

    Google Scholar 

  • Potts, L. (Ed.). (2000). Ideologies of breast cancer: A feminist perspective. New York: St. Martin’s Press.

    Google Scholar 

  • Rees, G., Fry, A., & Cull, A. (2001). A family history of breast cancer: Women’s experiences from a theoretical perspective. Soc Sci Med, 52, 1433–1440.

    Google Scholar 

  • Richards, M. (1996). Families, kinships and genetics. In T. Marteau and M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics (pp. 249–273). Cambridge: Cambridge University Press.

    Google Scholar 

  • Rosenbaum, M. E., & Roos, G. M. (2000). Women’s experiences of breast cancer. In A. S. Kasper & S. J. Ferguson (Eds.), Breast cancer: Society shapes an epidemic (pp. 153–182). New York: St. Martin’s Press.

    Google Scholar 

  • Roychoudhury, A., Tippins, D., & Nichols, S. (1995). Gender-inclusive science teaching: A feminist constructivist approach. J Res Sci Teach, 32, 897–924.

    Google Scholar 

  • Ryan, E., & Skinner, C. (1999). Risk beliefs and interest in counseling: Focus group interviews among first-degree relatives of breast cancer patients. J Cancer Educ, 14, 99–103.

    Google Scholar 

  • Sachs, L. (1999). Knowledge of no return: Getting and giving information about genetic risk. Acta Oncol, 38, 735–740.

    Google Scholar 

  • Sachs, L., Taube, A., & Tishelman, C. (2001). Risk in Numbers–Difficulties in the transformation of genetic knowledge from research to people. Acta Oncol, 40, 445–453.

    Google Scholar 

  • Saywell, C., Beattie, L., & Henderson, L. (2000). Sexualized illness: The newsworthy body in media representations of breast cancer. In L. Potts (Ed.), Ideologies of breast cancer (pp. 37–61). London: MacMillan Press Ltd.

    Google Scholar 

  • Schneider, K. (2002). Counseling about cancer: Strategies for genetic counseling. New York: Wiley-Liss.

    Google Scholar 

  • Shaw, C., Abrams, K., & Marteau, T. M. (1999). Psychological impact of predicting individuals’ risk of illness: A systematic review. Soc Sci Med, 49, 1571–1598.

    Google Scholar 

  • Smith, D. (1987). The everyday world as problematic: A feminist sociology. Boston: Northeastern University Press.

    Google Scholar 

  • Strauss, A., & Corbain, J. (1990). Basics of qualitative research: Ground theory procedures and techniques. London: Sage.

    Google Scholar 

  • Struewing, J. P., Lerman, C., Kase, R. G., Giambarresi, T., & Tucker, M. (1995). Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. Cancer Epidemiol Biomarkers Preve, 4, 169–173.

    Google Scholar 

  • Vernon, S., Voget, V., et al. (1993). Factors associated with perceived risk of reast cancer among women attending a screening program. Breast Cancer Res Treat, 28(2), 137-144.

    Google Scholar 

  • von Glaserfeld, E. (1984). An introduction to radical constructivism. In P. Watzlawick (Ed.), The invented reality (pp. 17–40). New York: Norton.

    Google Scholar 

  • Watson, M., Lloyd, S., Davidson, H., et al. (1999). The impact of genetic counseling on risk perception and mental health in women with a family history of cancer. Br J Cancer, 79, 868–874.

    Google Scholar 

  • Weihs, K., & Reis, D. (2000). Family reorganization in response to cancer: A developmental perspective. In L. Baider, C. Cooper, & A. K. De-Nour (Eds.), Cancer and the family, (2nd ed., pp. 17–40). New York: John Wiley & Sons, Ltd.

    Google Scholar 

  • Wellisch, D., & Lindberg, N. (2000). Women at increased risk for breast cancer: Family issues, clinical treatment and research findings. In L. Baider, C. Cooper, & A. Kaplan De-Nour (Eds.), Cancer and the family, (2nd ed., pp. 405–423). Chichester, NY: John Wiley & Sons.

    Google Scholar 

  • Wexler, N. (1979). Russian roulette: The experience of being at risk for Huntington’s disease: Harbinger of the new genetics. In S. Kessler (Ed.), Genetic counseling: Psychological dimensions (pp. 199–220). New York: Academic Press.

    Google Scholar 

  • Zakowski, S. G., Valdimarsdottir, H. B., Bowberg, D. H., Borgen, P., Holland, J., & Kash, K. (1997). Predictors of intrusive thoughts and avoidance in women with family histories of breast cancer. Ann Behav Med, 19, 362–369.

    Google Scholar 

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Authors and Affiliations

  1. Hereditary Cancer Program, BCCA, British Columbia V5Z 4C2, Vancouver, Canada

    Lori d’Agincourt-Canning

  2. Hereditary Cancer Program, BC Cancer Agency, #200-601 West Broadway, Vancouver, British Columbia, V5Z 4C2, Canada

    Lori d’Agincourt-Canning

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Correspondence to Lori d’Agincourt-Canning.

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d’Agincourt-Canning, L. The Effect of Experiential Knowledge on Construction of Risk Perception in Hereditary Breast/Ovarian Cancer. J Genet Counsel 14, 55–69 (2005). https://doi.org/10.1007/s10897-005-1500-0

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