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“It was an Emotional Baby”: Previvors’ Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk

  • Original Research
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Journal of Genetic Counseling

Abstract

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.

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Notes

  1. While this term is commonly used by individuals who test positive for a BRCA genetic mutation, not all BRCA+ individuals identify with this term; however, for the purpose of this study, we use the term as a large majority of our participants identified with it.

  2. According to the National Comprehensive Cancer Network (NCCN) guidelines on genetic/familial high-risk assessment for hereditary breast and ovarian cancer, although there may be some circumstances where healthcare providers may find ovarian screening helpful for patient care, overall data do not support routine ovarian screening.

  3. While the NCCN currently does not recommend women who are carriers of a BRCA mutation undergo a preventative hysterectomy, some women do consider this as a health option.

  4. FORCE originally conceptualized the term previvor in 1999 when one of their members expressed a desire to have a label to identify with.

  5. Intrauterine insemination (IUI) refers to the fertility treatment whereby a sperm is placed directly into a women’s uterus in order to increase the likelihood that many sperm will reach the fallopian tubes and result in a pregnancy.

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Acknowledgements

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.

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  1. Department of Communication, The University of South Florida, 4202 E Fowler Ave CIS 3057, Tampa, FL, 33620, USA

    Marleah Dean

  2. Department of Communication, Texas A&M University, College Station, TX, USA

    Emily A. Rauscher

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  1. Marleah Dean
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Correspondence to Marleah Dean.

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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.

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This article does not contain any studies with animals performed by any of the authors.

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Dean, M., Rauscher, E.A. “It was an Emotional Baby”: Previvors’ Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk. J Genet Counsel 26, 1301–1313 (2017). https://doi.org/10.1007/s10897-017-0069-8

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