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The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

  • Original Research
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Journal of Genetic Counseling

Abstract

Discovery of mutations in the breast and ovarian cancer susceptibility genes BRCA1 and BRCA2 can have emotional consequences for both the tested individual and his or her relatives. This secondary analysis study investigated how BRCA testing impacts family dynamics and relationships. For the original study, a grounded theory inquiry, participants were recruited from a hereditary breast/ovarian cancer syndrome support website and open-ended interviews were performed asking about individual and family experiences after BRCA testing. All 12 participants whose interviews were included in the secondary analysis had a BRCA mutation. For the secondary analysis, thematic analysis was conducted and revealed three main themes characterizing the effect of BRCA testing on family relationships: 1. That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family often change; and 3. That individuals may feel more or less connected to certain family members. These changes seemed to relate to family cancer history, relationships, coping strategies, communication patterns, and mutation status. Genetic counselors might find it useful to explore these issues in order to prepare clients before BRCA testing and to support them through shifts in family dynamics after disclosure of results.

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Acknowledgements

We thank the research participants for sharing their time and insight during the original study. This research was supported financially by a grant from Sigma Theta Tau International for 2004 and 2005. We also thank Elizabeth (Betsy) Gettig, MS, CGC and Darcy Thull, MS, CGC for helpful comments on the manuscript. This secondary analysis was conducted in partial fulfillment of author HAD’s Master of Science degree from the University of Pittsburgh. This work was presented at the National Society of Genetic Counselors 27th Annual Education Conference, October 23–28, 2008.

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Authors and Affiliations

  1. Centenary Site, Rouge Valley Health System, 4th floor Genetics Clinic, 2867 Ellesmere Road, Toronto, ON, M1E 4B9, Canada

    Heather A. Douglas

  2. Department of Women, Children and Family Health Sciences, University of Illinois at Chicago, Chicago, IL, USA

    Rebekah J. Hamilton

  3. Department of Human Genetics, University of Pittsburgh, Pittsburgh, PA, USA

    Robin E. Grubs

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  1. Heather A. Douglas
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  2. Rebekah J. Hamilton
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  3. Robin E. Grubs
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Correspondence to Heather A. Douglas.

APPENDIX A: Initial questions for original study

APPENDIX A: Initial questions for original study

  1. 1

    Go back with me to when you first started thinking of having a predictive genetic test and walk me through your thinking.

  2. 2

    Think back to when you first started hearing conversations in your family about cancer. What was being said? Who said it? What effect did that have on you—on thinking about your own health?

  3. 3

    What went in to your thinking about having the genetic test? Did you talk to anyone? Who? How did you decide who to talk to and who not to?

  4. 4

    What about the positive result created a change in how you thought about your own health, your own self, your family?

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Douglas, H.A., Hamilton, R.J. & Grubs, R.E. The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews. J Genet Counsel 18, 418–435 (2009). https://doi.org/10.1007/s10897-009-9232-1

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  • DOI: https://doi.org/10.1007/s10897-009-9232-1

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