Journal of Genetic Counseling

, Volume 13, Issue 3, pp 221–236 | Cite as

Decision Making with Uncertain Information: Learning from Women in a High Risk Breast Cancer Clinic

  • Caren J. Frost
  • Vickie Venne
  • Dianne Cunningham
  • Ruth Gerritsen-McKane

Abstract

Patients and practitioners may believe that clinically validated laboratory tests provide definitive information. Genetic counselors know this is not always so, and the possibility of inconclusive genetic test results is often discussed in the pretest counseling session. This added discussion topic prolongs the process of genetic counseling, but if there is inadequate patient understanding, patient frustration may be high when receiving a result of uncertain significance, and patients may make decisions about subsequent medical management based on incorrect assumptions. For patients/participants in a research setting, where the clinical validity of testing may be unclear, some patients/participants may still want to use test results to influence their medical management. This paper presents findings from a qualitative study wherein 15 women from the High Risk Breast Cancer Clinic at Utah's Huntsman Cancer Institute discussed how uncertainty regarding results affected their decision making. The women were randomly selected from 3 categories—women with test results of uncertain significance; women without cancer who have a mutation; and women who are members of high-risk families, but for whom no mutation was found. Study findings will be used in future studies to better understand how to improve communication regarding uncertain results, especially in a research environment.

uncertainty BRCA1 and BRCA2 genes breast cancer decision making grounded theory qualitative research 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

REFERENCES

  1. Bradac, J. J. (2001). Theory comparison: Uncertainty reduction, problematic integration, uncertainty management, and other curious constructs. J Commun, 51(3), 456-476.Google Scholar
  2. Brashers, D. E. (2001). Communication and uncertainty management. J Commun, 51(3), 477-497.Google Scholar
  3. Brinchmann, B. S., Forde, R., & Nortvedt, P. (2002). What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants. Nurs Ethics, 9(4), 388-404.Google Scholar
  4. Bureau, U. S. C. (2003, April 24). State and county quick facts: Utah, retrieved from http://quickfacts.census.gov.qfd.states/49000.htmlGoogle Scholar
  5. Burke, W., Pinsky, L. E., & Press, N. A. (2001). Categorizing genetic tests to identify their ethical, legal, and social implications. Am J Med Genet, 106(3), 233-240.Google Scholar
  6. Chimera, C., Brooks, K., Singeltary, C., & Young, S. (2002). The effects on patients after receiving a result of a variant of uncertain clinical significance for BRCA1 and BRCA2 testing. J Genet Couns, 11(6), 455.Google Scholar
  7. Culver, J., Burke, W., Yasui, Y., Durfy, S., & Press, N. (2001). Participation in breast cancer genetic counseling: The influence of educational level, ethnic background, and risk perception. J Genet Couns, 10(3), 215-231.Google Scholar
  8. Curnow, L., Savarirayan, R., & Massie, J. (2003). Genetic counseling after carrier detection by newborn screening when one parent carries DeltaF508 and the other R117H. Arch Dis Child, 88(10), 886-888.Google Scholar
  9. Daly, M. B., Offit, K., Li, F., Glendon, G., Yaker, A., West, D., et al. (2000). Participation in the cooperative family registry for breast cancer studies: Issues of informed consent. J Natl Cancer Inst, 92(6), 452-456.Google Scholar
  10. Decruyenaere, M., Evers-Kiebooms, G., & Van den Berghe, H. (1993). Perception of predictive testing for Huntington's disease by young women: Preferring uncertainty to certainty? J Med Genet, 30(7), 557-561.Google Scholar
  11. DeMarco, T. A., Peshkin, B. N., & Brogan, B. M. (2001). Across the spectrum: Case studies in genetic counseling for breast and ovarian cancer. J Genet Couns, 10(5), 379-395.Google Scholar
  12. DiGiovanni, C., Jr., Reynolds, B., Harwell, R., Stonecipher, E. B., & Burkle, F. M., Jr. (2003). Community reaction to bioterrorism: Prospective study of simulated outbreak. Emerg Infect Dis, 9(6), 708-712.Google Scholar
  13. Geller, G., Faden, R. R., & Levine, D. M. (1990). Tolerance for ambiguity among medical students: Implications for their selection, training and practice. Soc Sci Med, 31(5), 619-624.Google Scholar
  14. Grant, L. D., & Jarabek, A. M. (1990). Research on risk assessment and risk management: Future directions. Toxicol Individ Health, 6(5), 217-233.Google Scholar
  15. Guba, E., & Lincoln, Y. (1998). Competing paradigms in qualitative research. In N. Denzin & Y. Lincoln (s.), The landscape of qualitative research: Theories and issues (pp. 195-220). Thousand Oaks, CA: Sage.Google Scholar
  16. Hurley, K., Miller, S., Costalas, J., Gillespie, D., & Daly, M. (2001). Anxiety/uncertainuty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer. J Womens Health Gend Based Med, 10(2), 189-199.Google Scholar
  17. John, E. M., Hopper, J. L., Beck, J. C., Knight, J. A., Neuhausen, S. L., Senie, R. T., et al. (2004). The Breast Cancer Family Registry (Breast CFR): An insfrastructure of co-operative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer. Breast Cancer Research. Manuscript submitted for publication.Google Scholar
  18. Kenen, R., Smith, A. C. M., Watkins, C., & Zuber-Pittore, C. (2000). To use or not to use: The prenatal genetic technology/worry conundrum. J Genet Couns, 9(3), 203.Google Scholar
  19. Mennuti, M. T., & Driscoll, D. A. (2003). Screening for Down's syndrome–Too many choices? N Engl J Med, 349(15), 1471-1473.Google Scholar
  20. Mulvey, S., Zachariah, R., McIlwaine, K., & Wallace, E. M. (2003). Do women prefer to have screening tests for Down syndrome that have the lowest screen-positive rate or the highest detection rate? Prenat Diagn, 23(10), 828-832.Google Scholar
  21. Myriad Genetics Laboratories. (2001). Genetic testing section—Possible test results. In Genetic susceptibility testing for hereditary breast and ovarian cancer and hereditary nonpolyposis colorectal cancer: A patient counseling aid for health care professionals. Salt Lake City, Utah: Myriad Genetics Laboratories.Google Scholar
  22. Parsons, E. P., Beale, V., Bennett, H., Jones, J., & Lycett, E. J. (2000). Reassurance through surveillance in the face of clinical uncertainty: the experience of women at risk of familial breast cancer. Health Expect, 3(4), 263-273.Google Scholar
  23. Perkins, B. A., Popovic, T., & Yeskey, K. (2002). Public health in the time of bioterrorism. Emerg Infect Dis, 8(10), 1015-1018.Google Scholar
  24. Rosenthal, E. T., Biesecker, L. G., & Biesecker, B. B. (2001). Parental attitudes toward a diagnosis in children with unidentified multiple congenital anomaly syndromes. Am J Med Genet, 103(2), 106-114.Google Scholar
  25. Saleem, R., Gofin, R., Ben-Neriah, Z., & Boneh, A. (1998). Variables influencing parental perception of inherited metabolic diseases before and after genetic counseling. J Inherit Metab Dis, 21(7), 769-780.Google Scholar
  26. Schor, R., Pilpel, D., & Benbassat, J. (2000). Tolerance of uncertainty of medical students and practicing physicians. Med Care, 38(3), 272-280.Google Scholar
  27. Schwartz, L. M., & Woloshin, S. (2002). News media coverage of screening mammography for women in their 40s and tamoxifen for primary prevention of breast cancer. J Am Med Assoc, 287(23), 3136-3142.Google Scholar
  28. Senie, R. T., Andrulis, I. L., Daly, M. B., Hopper, J. L., Buys, S., West, D., et al. (2001). A unique resource for breast cancer research: The Cooperative Family Registry for Breast Cancer Studies. Eur J Hum Genet, 9(suppl 1), 273.Google Scholar
  29. Strauss, A., & Corbin, J. (1998a). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks CA: Sage.Google Scholar
  30. Strauss, A., & Corbin, J. (1998b). Grounded theory methodology: An overview. In N. Denzin & Y. Lincoln (s.), Strategies of qualitative inquiry (pp. 158-182). Thousand Oaks, CA: Sage.Google Scholar
  31. Strauss, R. P. (2002). Beyond easy answers: Prenatal diagnosis and counseling during pregnancy. Cleft Palate Craniofac J, 39(2), 164-168.Google Scholar
  32. Wertz, D. C., Sorenson, J. R., & Heeren, T. C. (1984). Genetic counseling and reproductive uncertainty. Am J Med Genet, 18(1), 79-88.Google Scholar
  33. Wu, Z. H., Freeman, J. L., Greer, A. L., Freeman, D. H., & Goodwin, J. S. (2001). The influence of patients' concerns on surgeons' recommendation for early breast cancer. Eur J Cancer Care, 10(2), 100-106.Google Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2004

Authors and Affiliations

  • Caren J. Frost
    • 1
  • Vickie Venne
    • 2
  • Dianne Cunningham
    • 1
  • Ruth Gerritsen-McKane
    • 1
  1. 1.Social Research Institute, College of Social WorkUniversity of UtahSalt Lake City
  2. 2.Huntsman Cancer InstituteUniversity of UtahSalt Lake City

Personalised recommendations