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Living With Genetic Vulnerability: a Life Course Perspective

  • Original Research
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Journal of Genetic Counseling

Abstract

This is the second article of a two part series about utilizing the life course perspective (LCP) in genetic counseling. Secondary data analysis was conducted on a grounded theory, longitudinal study which provided a wide focus on living with hereditary breast and ovarian cancer (HBOC) risk. The aim of this analysis was to explore the longitudinal data for both the temporal and social context of living with BRCA mutation genetic test results. Sixteen women from two previous studies were interviewed on multiple occasions over an 8 year time period. The LCP was used to direct a thematic analysis of the data. Families experience the consequences of knowing they carry a BRCA1 or BRCA2 gene mutation long after the initial diagnosis. These women’s experiences across time reflect the concepts of the LCP and show how life is changed when families know they live with a genetic vulnerability to an adult-onset and potentially life-threatening disease. Different emphases on concepts from the LCP were evident across the different age groups. For example, the group of 40–50 year old women emphasized the concept of linked lives, those in their 30’s focused on human agency and women in their 20’s were more focused on timing of events. This study helps give direction to healthcare providers counseling women living with a BRCA mutation.

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Acknowledgments

Research was supported by Rush College of Nursing Research Fund.

Conflict of Interest

Rebekah J. Hamilton, Nancy A. Innella, & Dawn T. Bounds 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.

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Authors and Affiliations

  1. Department of Women, Children & Family Nursing, Rush University College of Nursing, 2624 Newcastle Dr., Carrollton, TX, 75007, USA

    Rebekah J. Hamilton, Nancy A. Innella & Dawn T. Bounds

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  1. Rebekah J. Hamilton
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  2. Nancy A. Innella
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  3. Dawn T. Bounds
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Correspondence to Rebekah J. Hamilton.

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Hamilton, R.J., Innella, N.A. & Bounds, D.T. Living With Genetic Vulnerability: a Life Course Perspective. J Genet Counsel 25, 49–61 (2016). https://doi.org/10.1007/s10897-015-9877-x

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  • DOI: https://doi.org/10.1007/s10897-015-9877-x

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