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Genetic Testing and Post-Testing Decision Making among BRCA-Positive Mutation Women: A Psychosocial Approach

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Through an analysis of an online survey of women who tested positive for the BRCA genetic mutation for breast cancer, this research uses a social constructionist and feminist standpoint lens to understand the decision-making process that leads BRCA-positive women to choose genetic testing. Additionally, this research examines how they socially construct and understand their risk for developing breast cancer, as well as which treatment options they undergo post-testing. BRCA-positive women re-frame their statistical medical risk for developing cancer and their post-testing treatment choices through a broad psychosocial context of engagement that also includes their social networks. Important psychosocial factors drive women’s medical decisions, such as individual feelings of guilt and vulnerability, and the degree of perceived social support. Women who felt guilty and fearful that they might pass the BRCA gene to their children were more likely to undergo risk reducing surgery. Women with at least one daughter and women without children were more inclined toward the risk reducing surgery compared to those with only sons. These psychosocial factors and social network engagements serve as a “nexus of decision making” that does not, for the most part, mirror the medical assessments of statistical odds for hereditary cancer development, nor the specific treatment protocols outlined by the medical establishment.

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Notes

  1. Items on the original MICRA scale have values ranging as described above: there was no “4”.

  2. By block we mean that demographic characteristics were entered the regression model all together and statistically insignificant ones were dropped out of the analysis one by one until all the left ones were significant. Then the procedure was repeated for the addition of a block of psychosocial scales.

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Acknowledgments

The authors wish to thank Jing Jiang for her outstanding research assistance. In addition we thank Lauren Simao, Sara Van Shaik, and Zainab Klyam for their careful reading of the manuscript.

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Authors and Affiliations

  1. Department of Sociology, Boston College, McGuinn Hall 419, 140 Commonwealth Avenue, Chestnut Hill, Boston, MA, 02467, USA

    Sharlene Hesse-Biber

  2. Department of Educational Research, Measurement, and Evaluation, Boston College, Chestnut Hill, Boston, MA, USA

    Chen An

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  1. Sharlene Hesse-Biber
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Correspondence to Sharlene Hesse-Biber.

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Conflict of Interest

Sharlene Hesse-Biber and Chen An 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.

Animal Studies

No animal studies were carried out by the authors for this article.

Appendices

Appendices

Appendix A Items of the MICRA and the Self-Concept Scales

Table 7 Items on the MIRCA scale grouped by original subscales
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Table 8 Items on the self-concept scale grouped by original subscales
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Appendix B Factor Analysis Results for the MICRA and the Self-Concept Scales

Table 9 Factor analysis results for the MICRA scale
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Table 10 Factor analysis results for the self-concept scale
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Appendix C Reliability Statistics for the MICRA and the Self-Concept Scales

Table 11 Reliability statistics for each subscale
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Hesse-Biber, S., An, C. Genetic Testing and Post-Testing Decision Making among BRCA-Positive Mutation Women: A Psychosocial Approach. J Genet Counsel 25, 978–992 (2016). https://doi.org/10.1007/s10897-015-9929-2

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