“It was an Emotional Baby”: Previvors’ Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk
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Women who test positive for a BRCA genetic mutation are at an increased risk for developing hereditary breast and ovarian cancer and have a 50% chance of passing on their genetic mutation to their children. The purpose of this study was to investigate how women who test positive for a BRCA mutation but have not been diagnosed with cancer make decisions regarding family planning. Analysis of interviews with 20 women revealed they engage in logical and emotional decision-making styles. Although women want to be logical to reduce their hereditary cancer risk, emotions often complicate their decision-making. Women experience fear and worry about a future cancer diagnosis, yet also desire to create a family, particularly having children through natural conception. That is, women negotiate having preventative surgeries in a logical doctor-recommended timeframe but also organize those decisions around emotional desires of motherhood. Overall, this study demonstrates the complex decisions women who test positive for a BRCA mutation must make in regards to genetic testing timing, family planning, and overall quality of life.
KeywordsHereditary breast and ovarian cancer Decision-making Genetic risk Disease risk Genetic testing Family communication BRCA1, BRCA2 Qualitative research
We would like to express our gratitude to Facing Our Risk of Cancer Empowered (FORCE) for allowing them to recruit participants. We would also like to thank our participating for being willing to share their family planning experiences with us.
Compliance with Ethical Standards
Conflict of Interest
Authors Marleah Dean, PhD and Emily Rauscher, PhD declare 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.
This article does not contain any studies with animals performed by any of the authors.
- Alwan, S., Yee, I. M., Dybalski, M., Guimond, C., Dwosh, E., Greenwood, T. M., et al. (2012). Reproductive decision making after the diagnosis of multiple sclerosis (MS). Multiple Sclerosis Journal, 19(3), 1–8.Google Scholar
- Burke, W., Daly, M., Garber, J., Botkin, J., Kahn, M. J. E., Lynch, P., ... & Thomson, E. (1997). Recommendations for follow-up care of individuals with an inherited predisposition to cancer: II. BRCA1 and BRCA2. JAMA, 277(12), 997-1003.Google Scholar
- Chan, J. L., Johnson, L. N., Sammel, M. D., DiGiovanni, L., Voong, C., Domchek, S. M., & Gracia, C. R. (2016). Reproductive decision-making in women with BRCA1/2 mutations. Journal of Genetic Counseling, 1–10.Google Scholar
- Corbin, J., & Strauss, A. (2007). Basics of qualitative research: techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks: Sage.Google Scholar
- Decruyenaere, M., Evers-Kiebooms, G., Boogaerts, A., Cassiman, J. J., Cloostermans, T., Demyttenaere, K., et al. (1996). Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making. Journal of Medical Genetics, 33(9), 737–743.CrossRefPubMedPubMedCentralGoogle Scholar
- Evans D. G., Gaarenstroom K. N, Stirling D, et al. Screening for familial ovarian cancer: Poor survival of BRCA1/2 related cancers. Journal of Medical Genetics 2009; 46(9):593–597.Google Scholar
- Friedman, S., Sutphen, R., & Steligo, K. (2012). Confronting hereditary breast and ovarian cancer: identify your risk, understand your options, change your destiny. New York: John Hopkins University Press.Google Scholar
- Geertz, C. (1973). The interpretation of cultures. New York: Basic Books.Google Scholar
- Glanz, K., Lewis, F. M., & Rimer, B. K. (2002). Health behavior and health education: theory, research, and practice. San Francisco: Jossey-Bass.Google Scholar
- Hesse-Biber, S. N., & Levy, P. (2006). The practice of qualitative research. Thousand Oaks: Sage.Google Scholar
- Jolie Pitt, A. (2015). Diary of a surgery. The New York Times. Retrieved from http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html?_r=0.
- Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.Google Scholar
- Lindlof, T. R., & Taylor, B. C. (2011). Qualitative communication research methods (3rd ed.). Thousand Oaks, CA: Sage.Google Scholar
- Matthews, L. T., Crankshaw, T., Giddy, J., Kaida, A., Smit, J. A., Ware, N. C., & Bangsberg, D. R. (2013). Reproductive decision-making and periconception practices among HIV-positive men and women attending HIV services in Durban, South Africa. AIDS and Behavior, 17(2), 461–470.CrossRefPubMedGoogle Scholar
- Merriam, S. B. (2009). Qualitative research: a guide to design and implementation. San Francisco: Jossey-Bass.Google Scholar
- Morgan, M. G., Fischhoff, B., Bostrom, A., & Atman, C. J. (2002). Risk communication: a mental models approach. Cambridge: Cambridge University Press.Google Scholar
- Ormondroyd, E., Donnelly, L., Moynihan, C., Savona, C., Bancroft, E., Evans, D. G., et al. (2012). Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis. European Journal of Human Genetics, 20(1), 4–10.CrossRefPubMedGoogle Scholar
- Politi, M., & Street Jr., R. L. (2011). Patient-centered communication during collaborative decision-making. In T. L. Thompson, R. Parrott, & J. F. Nussbaum (Eds.), The Routledge handbook of health communication (2nd ed., pp. 399–413). New York: Routledge.Google Scholar
- Prouix, M., Beaulieu, M. D., Loignon, C., Mayrand, M. H., Maugard, C., Bellavance, N., & Provencher, D. (2009). Experiences and decisions that motivate women at increased risk of breast cancer to participate in an experimental screening program. Journal of Genetic Counseling, 18(2), 160–172.CrossRefGoogle Scholar
- Quinn, G. P., Vadaparampil, S. T., Tollin, S., Miree, C. A., Murphy, D., Bower, B., & Silva, C. (2010b). BRCA carriers' thoughts on risk management in relation to preimplantation genetic diagnosis and childbearing: when too many choices are just as difficult as none. Fertility and Sterility, 94(6), 2473–2475.CrossRefPubMedGoogle Scholar
- Rodney, P., Burgess, M., McPherson, G., & Brown, H. (2004). Our theoretical landscape: a brief history of health care ethics. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: nursing ethics for leadership and practice (pp. 56–97). Toronto: Pearson-Prentice Hall.Google Scholar
- van Manen, M. (1990). Researching lived experience: human science for action sensitive pedagogy. Albany: Suny Press.Google Scholar
- Werner-Lin, A., Hoskins, L. M., Doyle, M. H., & Greene, M. H. (2012). ‘Cancer doesn’t have an age’: Genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18–24. Health: An Interdisciplinary Journal for the Social Study of Health, Illness & Medicine, 16(6), 636.CrossRefGoogle Scholar