Journal of Genetic Counseling

, Volume 26, Issue 3, pp 455–468 | Cite as

“I Don’t Want to Be an Ostrich”: Managing Mothers’ Uncertainty during BRCA1/2 Genetic Counseling

  • Carla L. Fisher
  • Thomas Roccotagliata
  • Camella J. Rising
  • David W. Kissane
  • Emily A. Glogowski
  • Carma L. Bylund
Original Research


Families who face genetic disease risk must learn how to grapple with complicated uncertainties about their health and future on a long-term basis. Women who undergo BRCA 1/2 genetic testing describe uncertainty related to personal risk as well as their loved ones’, particularly daughters’, risk. The genetic counseling setting is a prime opportunity for practitioners to help mothers manage uncertainty in the moment but also once they leave a session. Uncertainty Management Theory (UMT) helps to illuminate the various types of uncertainty women encounter and the important role of communication in uncertainty management. Informed by UMT, we conducted a thematic analysis of 16 genetic counseling sessions between practitioners and mothers at risk for, or carriers of, a BRCA1/2 mutation. Five themes emerged that represent communication strategies used to manage uncertainty: 1) addresses myths, misunderstandings, or misconceptions; 2) introduces uncertainty related to science; 3) encourages information seeking or sharing about family medical history; 4) reaffirms or validates previous behavior or decisions; and 5) minimizes the probability of personal risk or family members’ risk. Findings illustrate the critical role of genetic counseling for families in managing emotionally challenging risk-related uncertainty. The analysis may prove beneficial to not only genetic counseling practice but generations of families at high risk for cancer who must learn strategic approaches to managing a complex web of uncertainty that can challenge them for a lifetime.


Uncertainty Communication Breast cancer Genetic testing Family communication BRCA1 BRCA2 Genetic counseling Qualitative research Disease risk Coping 



This study was funded by Oki-Data Americas. The authors dedicate this study in memory of Dale Brashers, Ph.D. and Margaret Mary Roccotagliata.

Compliance with Ethical Standards

Conflict of Interest

Authors Carla L. Fisher, PhD, Thomas Roccotagliata, MA, Camella J. Rising, MS, RDN, David W. Kissane, MD, Emily A. Glogowski, MS, MSc, and Carma L. Bylund, PhD declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.


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Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  • Carla L. Fisher
    • 1
    • 2
  • Thomas Roccotagliata
    • 2
  • Camella J. Rising
    • 2
  • David W. Kissane
    • 3
    • 4
  • Emily A. Glogowski
    • 5
  • Carma L. Bylund
    • 6
    • 7
    • 4
  1. 1.Department of Advertising, STEM Translational Communication Center, UF Health Cancer Center AffiliateUniversity of FloridaGainesvilleUSA
  2. 2.Department of Communication, Center for Health & Risk CommunicationGeorge Mason UniversityFairfaxUSA
  3. 3.Department of PsychiatryMonash UniversityMelbourneAustralia
  4. 4.Memorial Sloan Kettering Cancer CenterNew York CityUSA
  5. 5.GeneDxGaithersburgUSA
  6. 6.Hamad Medical CorporationDohaQatar
  7. 7.Weill Cornell Medical College in QatarAl RayyanQatar

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