To tell or not to tell: barriers and facilitators in family communication about genetic risk

TLDR

Communication about genetic risk in families is a key concern for genetic counsellors, and understanding how familial and cultural factors shape disclosure could help identify strategies that promote considered decisions and prevent unnecessary emotional distress. The study aimed to explore the barriers and facilitators in family communication about genetic risk. Semi‑structured interviews were conducted with patients in Northeast Scotland who had attended genetic counselling for hereditary breast and ovarian cancer and Huntington's disease, and with some spouses or partners. Interviews revealed that disclosure is problematic for some, with generic communication issues common to both disease groups; family responsibility, structure, dynamics, rules, a sense of duty to younger generations, and personal certainty about risk all influence disclosure decisions, making communication a complex issue shaped by pre‑existing familial and cultural factors and individual responses to risk information.

Abstract

Communication about genetic risk in families is an important issue for genetic counsellors. The objective of this study was to explore the barriers and facilitators in family communication about genetic risk. Semi‐structured interviews were undertaken with patients in the Northeast of Scotland who had attended genetic counselling for risk of hereditary breast and ovarian cancer and Huntington's disease, and with some spouses/partners. The interviews confirmed that the issue of disclosure was a problem for some, and that there were generic communication issues common to both groups. Telling family members about genetic risk was generally seen as a family responsibility and family structures, dynamics and ‘rules’ influenced disclosure decisions. A sense of responsibility towards younger generations was also important. The level of certainty felt by a person in relation to his or her own risk estimate also influenced what he or she could tell other family members. Communication within a family about genetic risk is a complex issue and is influenced by both pre‐existing familial and cultural factors and individuals' responses to risk information. If genetic counsellors understood how these factors operate in individual families they might be able to identify effective strategies to promote considered decisions and prevent unnecessary emotional distress.