BRCA1/2 testing in hereditary breast and ovarian cancer families II: Impact on relationships

Abstract

Members of hereditary breast and ovarian cancer (HBOC) families often express concern during genetic counseling about the impact of BRCA1/2 testing on close relatives. Yet whether there are likely to be adverse effects of either the decision to undergo genetic testing or the results of testing on family relationships is unknown. One purpose of this study was to assess the impact on close family relationships. Within a randomized trial of breast cancer genetic counseling methods, members of 13 HBOC families were offered BRCA1/2 testing for a known family mutation. The Family Relationship Index (FRI) of the Family Environment Scale (FES) was used to measure perceived family cohesion, conflict, and expressiveness at baseline and again 6-9 months following the receipt of test results, or at the equivalent time for those who declined testing. Participants (n = 212) completed baseline and follow-up questionnaires. Comparisons were made between testers and non-testers as well as between those who tested positive and negative for the family mutation. One hundred eighty-one participants elected to undergo genetic testing (85%) and 47 (26%) were identified to have a mutation. After adjusting for baseline family relationship scores, counseling intervention, gender and marital status, non-testers reported a greater increase in expressiveness (P = 0.006) and cohesion (P = 0.04) than testers. Individuals who tested positive reported a decrease in expressiveness (P = 0.07), although as a trend. Regardless of test decision or test result, those who were randomized to a client-centered counseling intervention reported a decrease in conflict (P = 0.006). Overall, study results suggest that undergoing genetic testing and learning ones BRCA1/2 status may affect family relationships. Those individuals who declined testing reported feeling closer to family members and more encouraged to express emotions to other family members demonstrating potential benefit from the offer of testing. Since those who tested positive reported feeling less encouraged to express their emotions within the family, we recommend helping clients to identify others with whom they feel comfortable sharing their thoughts and feelings about their positive gene status and increased cancer risk.

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

“…The study by Bradbury et al (2007) on the effect of genetic testing on the overall family relationship found that while 65% of individuals reported no change in their relationship with their offspring upon disclosure of the test result, 22% reported a strengthening of their relationship. Also, McInerney-Leo et al (2005) found that perceptions of family cohesion increased upon making a testing decision. Interestingly, in this study family cohesion seemed to increase even if the decision was to not pursue testing.…”

“…In many families there were reportedly no significant changes in overall family functioning, relationships, or family conflict (McInerney-Leo et al, 2005;Bradbury et al, 2007;Stroup and Smith, 2007).…”

“…Also, McInerney-Leo et al (2005) found that perceptions of family cohesion increased upon making a testing decision. Interestingly, in this study family cohesion seemed to increase even if the decision was to not pursue testing. …”

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

“…[20][21][22][23][24][25] Only a few studies were specifically conducted to quantify the effects of the genetic testing process on family relationships. [26][27][28] Data on the incidence of long term (i.e., >1 year) of family relationship effects after the receipt of test result are still lacking.…”

“…25,27 In the months following the test result disclosure, a decrease in the level of family cohesion and expressiveness have also been reported. 26,28 To the best of our knowledge, no study has yet evaluated how other sociodemographic, medical, and psychosocial characteristics are associated with the incidence of long-term effects on family relationships in the context of BRCA1/2 genetic testing. Identification of the possible relationship effects and their modifiable factors can help to develop strategies to relieve concern about possible adverse impacts of genetic testing on family interrelationships, which may in turn encourage testing for those at high risk of being mutation carriers.…”