The purpose of this study was to explore experiences of cancer in the family and motivation for predictive genetic testing among women at increased risk of developing breast and/or ovarian cancer due to their family history. Fifteen women were interviewed prior to receiving their genetic test results. A grounded theory approach was adopted to analyse the interview transcripts. The findings indicated that experiences of cancer in the family play an important role in formulating beliefs about one’s own risk and motivation for predictive genetic testing. A sense of responsibility for one’s own health and the need to take action either to prevent cancer or detect cancer at as early a stage as possible, as well as a feeling of responsibility towards children and other family members was apparent. The findings raise the question of whether there is any real choice available to these women and whether there is a negative impact on family dynamics.
Ardern-Jones, A. (1997). Living with a cancer legacy: The experience of living with hereditary cancer in the family. Unpublished master’s dissertation, University of London.
2.
Alagna, S. W. , Morokoff, P. J., Bevett, J. M., & Reddy, D. M. (1987). Performance of breast self examination by women at risk for breast cancer. Women and Health, 12(2), 29-46.
3.
Cancer Research Campaign (2001). Retrieved 8 October 2001 from http://www.crc.org.uk/cancer/cancer_intro.html
4.
Chalmers, K. , & Thomson, K. (1996). Coming to terms with the risk of breast cancer: Perceptions of women with primary relatives with breast cancer. Qualitative Health Research, 6(2), 256-282.
5.
Chamberlain, K. (1999). Using grounded theory in health psychology: Practices, premises and potential. In M. Murray, & K. Chamberlain (Eds.), Qualitative health psychology: Theories and methods (pp. 183-201). London: Sage.
6.
Chamberlain, K. , Stephens, C., & Lyons, A. C. (1997). Encompassing experience: meanings and methods in health psychology. Psychology and Health, 12, 691-709.
7.
Claus, E. B. , Schildkraut, J. M., Thompson, W. D., & Risch, N. J. (1996). The genetic attributable risk of breast and ovarian cancer. Cancer, 77, 2318-2324.
8.
Cull, A. , Anderson, E. D. C., Campbell, S., Mackay, J., Smyth, E., & Steel, M. (1999). The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress. British Journal of Cancer, 79(3/4), 501-508.
9.
Duffy, S. W. , Chen, H. H., Tabar, L., Fagerberg, G., & Paci, E. (1996). Sojourn time, sensitivity and positive predictive value of mammography screening for breast cancer in women aged 40-49. International Journal of Epidemiology, 25, 1139-1145.
10.
Evans, D. G. R. , Burnell, L. D., Hopwood, P., & Howell, A. (1993). Perception of risk in women with a family history of breast cancer. British Journal of Cancer, 67, 612-614.
11.
Ford, D. , Easton, D., Stratton, M., Narod, S., Goldgar, D., Devilee, P., et al. (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. American Journal of Human Genetics, 62, 676-689.
12.
Glaser, B. , & Strauss, A. (1967). The discovery of grounded theory. Chicago: Aldine.
13.
Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility. Sociology of Health & Illness, 21(5), 597-621.
14.
International Human Genome Sequencing Consortium . (2001). Initial sequencing and analysis of the human genome. Nature, 409, 860-921.
15.
Juengst, E. T. (1999). Genetic testing and the moral dynamics of family life. Public Understanding of Science, 8, 193-205.
16.
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. Journal of the National Cancer Institute, 84, 24-30.
17.
Kenen, R. (1994). The human genome project: Creator of the potentially sick, potentially vulnerable and potentially stigmatised? In I. Robinson (Ed.), Life and death under high technology medicine (pp. 49-64). Manchester University Press.
18.
Lerman, C. , Daly, M., Sands, C., Balshem, A., Lustbader, E., Heggan, T., et al. (1993). Mammography adherence and psychological distress among women at risk for breast cancer. Journal of the National Cancer Institute, 85, 1074-1080.
19.
Lerman, C. , Lustbader, E., Rimer, B., Daly, M., Miller, S., Sands, C., & Balshem, A. (1995). Effects of individualised breast cancer risk counselling: A randomised trial. Journal of the National Cancer Institute, 87(4), 286-292.
20.
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 for genetic counselling. British Journal of Cancer, 74, 482-487.
21.
Miki, Y. , Swensen, J., Shattuck Eidens, D., Futreal, P. A., Harshman, K., Tavtigian, S., et al. (1994). A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science, 266, 66-71.
22.
Rapp, R. (2000). Testing women, testing the fetus: The social implications of amniocentesis in America. New York: Routledge.
23.
Richards, M. , & Ponder, M. (1996). Lay understanding of genetics: A test of a hypothesis. Journal of Medical Genetics, 33, 1032-1036.
24.
Schwartz, M. , Lerman, C., Miller, S. M., Daly, M., & Masny, A. (1995). Coping disposition, perceived risk, and psychological distress among women at increased risk of ovarian cancer. Health Psychology, 14(3), 232-235.
25.
Smith, J. A. (1996). Evolving issues for qualitative psychology. In J. T. E. Richardson (Ed.), Handbook of qualitative research methods for psychology and the social sciences (pp. 189-201). Leicester: BPS Books.
26.
Strauss, A. L. , & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. California: Sage.
27.
Tambor, E. S. , Rimer, B. K., & Strigo, T. S. (1997). Genetic testing for breast cancer susceptibility: Awareness and interest among women in the general population. American Journal of Medical Genetics, 68, 43-49.
28.
Tversky, A. , & Kahneman, D. (1982). Judgement under uncertainty: Heuristics and biases. In D. Kahneman, P. Slovic., & A. Tversky (Eds.), Judgement under uncertainty: Heuristics and biases (pp. 3-20). Cambridge: Cambridge University Press.
29.
Watson, M. , Lloyd, S., Eeles, R., Ponder, B., Easton, D., Seal, S., et al. (1996). Psychosocial impact of testing (by linkage) for the BRCA1 breast cancer gene: An investigation of two families in the research setting. Psycho-Oncology, 5(3), 233-239.
30.
Watson, M. , Lloyd, S., Davidson, J., Meyer, L., Eeles, R., Ebbs, S., & Murday, V. (1999). The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer. British Journal of Cancer, 79(5/6), 868-874.
31.
Wellisch, D. , Gritz, E., Schain, W., Wang, H-J., & Siau, J. (1992). Psychological functioning of daughters of breast cancer patients. Part II: Characterising the distressed daughter of the breast cancer patient. Psychosomatics, 33(2), 171-179.
32.
Wellisch, D. , Schain, W., Gritz, E., & Wang, H. J. (1996). Psychological functioning of daughters of breast cancer patients. Part III: Experiences and perceptions of daughters related to mother’s breast cancer. Psycho-Oncology, 5, 271-281.
33.
Williams, J. M. G. , Watts, F. N., MacLeod, C., & Mathews, A. (1997). Cognitive Psychology and Emotional Disorders. Chichester: John Wiley.
34.
Wooster, R. , Bignell, G., Lancaster, J., Swift, S., Seal, S., Mangion, J., et al. (1995). Identification of the breast susceptibility gene BRCA2. Nature, 378, 789-791.
35.
Wroe, A. L. , Salkovskis, P. M., & Rimes, K. A. (1998). The prospect of predictive testing for personal risk: Attitudes and decision making. Behaviour Research and Therapy, 36, 599-619.
