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


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 


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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

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