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J Genet Couns. 2017 Jun;26(3):455-468. doi: 10.1007/s10897-016-9998-x. Epub 2016 Jul 30.

"I Don't Want to Be an Ostrich": Managing Mothers' Uncertainty during BRCA1/2 Genetic Counseling.

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Department of Advertising, STEM Translational Communication Center, UF Health Cancer Center Affiliate, University of Florida, Gainesville, FL, USA.
Department of Communication, Center for Health & Risk Communication, George Mason University, Fairfax, VA, USA.
Department of Communication, Center for Health & Risk Communication, George Mason University, Fairfax, VA, USA.
Department of Psychiatry, Monash University, Melbourne, VIC, Australia.
Memorial Sloan Kettering Cancer Center, New York City, NY, USA.
GeneDx, Gaithersburg, MD, USA.
Hamad Medical Corporation, Doha, Qatar.
Weill Cornell Medical College in Qatar, Al Rayyan, Qatar.


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.


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

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