Decision making with uncertain information: Learning from women in a high risk breast cancer clinic

Journal of Genetic Counseling

Volumn 13, Issue 3, 2004, Pages 221-236

  Frost, Caren J ^a   Venne, Vickie ^b   Cunningham, Dianne ^a   Gerritsen McKane, Ruth ^a  

^a UNIVERSITY OF UTAH   (United States)

^b UNIVERSITY OF UTAH   (United States)

Author keywords

BRCA1 and BRCA2 genes; Breast cancer; Decision making; Grounded theory; Qualitative research; Uncertainty

Indexed keywords

ADULT; AGED; ARTICLE; BREAST CANCER; CANCER RISK; CLINICAL ARTICLE; CONTROLLED STUDY; FAMILY; FEMALE; GENE MUTATION; HEALTH CENTER; HIGH RISK PATIENT; HUMAN; LEARNING; MEDICAL DECISION MAKING; MEDICAL INFORMATION; PATIENT INFORMATION; QUALITATIVE ANALYSIS; RANDOMIZATION;

ADULT; AGE FACTORS; AGED; BREAST NEOPLASMS; COHORT STUDIES; DECISION MAKING; DNA MUTATIONAL ANALYSIS; FEMALE; GENES, BRCA1; GENES, BRCA2; GENETIC COUNSELING; GENETIC SCREENING; HUMANS; MALE; MIDDLE AGED; PATIENT ACCEPTANCE OF HEALTH CARE; PATIENT PARTICIPATION; RISK ASSESSMENT; UNCERTAINTY; VARIATION (GENETICS);

EID: 3543038163     PISSN: 10597700     EISSN: None     Source Type: Journal    
DOI: 10.1023/B:JOGC.0000027958.02383.a9     Document Type: Article

References (33)

1. Bradac, J. J. (2001). Theory comparison: Uncertainty reduction, problematic integration, uncertainty management, and other curious constructs. J Commun, 51(3), 456-476.
2. Brashers, D. E. (2001). Communication and uncertainty management. J Commun, 51(3), 477-497.
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.
4. Bureau, U. S. C. (2003, April 24). State and county quick facts: Utah, retrieved from http://quickfacts.census.gov.qfd.states749000.html
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.
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.
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.
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.
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.
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.
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.
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.
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.
14. Grant, L. D., & Jarabek, A. M. (1990). Research on risk assessment and risk management: Future directions. Toxicol Individ Health, 6(5), 217-233.
15. Guba, E., & Lincoln, Y. (1998). Competing paradigms in qualitative research. In N. Denzin & Y. Lincoln (Eds.), The landscape of qualitative research: Theories and issues (pp. 195-220). Thousand Oaks, CA: Sage.
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.
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.
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.
19. Mennuti, M. T., & Driscoll, D. A. (2003). Screening for Down's syndrome-Too many choices? N Engl J Med, 349(15), 1471-1473.
20. Mulvey, S., Zachariah, R., Mcllwaine, 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.
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.
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.
23. Perkins, B. A., Popovic, T., & Yeskey, K. (2002). Public health in the time of bioterrorism. Emerg Infect Dis, 8(10), 1015-1018.
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.
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 Metub Dis, 21(7), 769-780.
26. Schor, R., Pilpel, D., & Benbassat, J. (2000). Tolerance of uncertainty of medical students and practicing physicians. Med Care, 38(3), 272-280.
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.
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.
29. Strauss, A., & Corbin, J. (1998a). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks CA: Sage.
30. Strauss, A., & Corbin, J. (1998b). Grounded theory methodology: An overview. In N. Denzin & Y. Lincoln (Eds.), Strategies of qualitative inquiry (pp. 158-182). Thousand Oaks, CA: Sage.
31. Strauss, R. P. (2002). Beyond easy answers: Prenatal diagnosis and counseling during pregnancy. Cleft Palate Craniofuc J, 39(2), 164-168.
32. Wertz, D. C., Sorenson, J. R., & Heeren, T. C. (1984). Genetic counseling and reproductive uncertainty. Am J Med Genet, 18(1), 79-88.
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.