Family Environments of Women Seeking BRCA1/BRCA2 Genetic Mutation Testing: An Exploratory Analysis

Abstract

Although there is some understanding of the shared characteristics and predictors of psychological distress of women participating in hereditary breast and ovarian cancer registries, these same characteristics are only beginning to be identified in research on community women seeking genetic testing for BRCA1/BRCA2 gene mutations. This study provides an initial exploration of characteristics associated with family environments for 51 community women waiting to receive such genetic testing results. Thirty-four of the 36 women classified on family environment type of the Family Environment Scale (FES) were from Personal Growth-Oriented families. Comparisons of women with and without personal cancer histories resulted in a trend for women with personal cancer histories to be classified as from Independence-Oriented families. Reported distress appears to vary for different family emphases based on family and personal cancer history. A moral-religious family emphasis consistently appeared to be associated with decreased psychological distress. Preliminary analyses comparing these community women (who were not part of a hereditary registry but were self- or physician-referred) seeking genetic testing with normal and distressed family means found that increased cohesion and expressiveness may be related to decreased conflict, indicative of potentially supportive family environments for these women. When compared with normative data, a subset consisting of the Ashkenazi Jewish women showed a trend of less cohesion than normal families, but similar cohesion levels as distressed families.

Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study

“…Family communication regarding hereditary cancer and family support during genetic testing may be more essential for hereditary cancer distress and cancer worry. Indeed, in two studies that addressed family functioning in genetic counseling, family functioning was only related to satisfaction with hereditary cancer genetic counseling (40) and general distress (41).…”

Individual and family characteristics associated with BRCA1/2 genetic testing in high‐risk families

“…However, to date few studies have examined the relationship between family characteristics and the actual decision to use genetic testing. It has been suggested that an unsupportive family environment has been associated with low rates of testing . However, more information is necessary in order to provide decision support to families who harbor cancer‐predisposing mutations.…”

Family communication matters: The impact of telling relatives about unclassified variants and uninformative DNA-test results

“…15 A proband may provide social support and be open, or instead be closed, nonsupportive and avoidant in the communication. 3,[15][16][17] These communication processes between proband and relative could be influenced by family-relational characteristics such as level of openness to discuss cancer. 1,2,18 Fourth, relatives recall and interpret the information that the proband has communicated about their cancer risks and heredity likelihood.…”