Living With Genetic Vulnerability: a Life Course Perspective

J Genet Couns. 2016 Feb;25(1):49-61. doi: 10.1007/s10897-015-9877-x. Epub 2015 Sep 2.


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.

Keywords: BRCA; Hereditary breast and ovarian cancer; Life course perspective; Longitudinal study.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Breast Neoplasms / genetics
  • Breast Neoplasms / psychology*
  • Counseling / methods
  • Female
  • Genes, BRCA1
  • Genes, BRCA2
  • Genetic Counseling / methods*
  • Genetic Predisposition to Disease
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Longitudinal Studies
  • Middle Aged
  • Ovarian Neoplasms / genetics
  • Ovarian Neoplasms / psychology*
  • Quality of Life / psychology*

Supplementary concepts

  • Breast Cancer, Familial