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

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.

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

“…The challenge of communicating about genetic risk, particularly with prospective partners, will become commonplace as personal genetic risk information becomes increasingly available (Forrest et al 2003;Wilson et al 2004). In communities where courtship before marriage is the norm, this usually just involves the couple.…”

Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations

“…Communication plays a significant role in managing life at increased risk of cancer and is likely linked to participation in surveillance programs and thereby to the possibilities of reducing morbidity and mortality from colorectal cancer [11,21-25]. Misconceptions were identified among both carriers and non-carriers and were related to children’s risks and the outcome of genetic testing.…”

“…open communication, positive attitudes, well-functioning relations, and support from the partner [8,10]. In contrast, suboptimal communication, poor family relations and decisions to restrict disclosure of information may hamper information spread [9,11]. Family structure and function may not only influence how family members receive information, but also how knowledge about an increased risk is handled, decisions related to genetic testing and participation in surveillance [8,10,12].…”

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

“…2 Individual characteristics and patterns of family behaviour and relationships, disease characteristics and cultural factors may withhold or delay disclosure of genetic information to atrisk relatives, even when consultands see this as their personal responsibility. [3][4][5][6][7] Although guidelines recommend that professionals should not contact family members directly, that also state that professionals should actively encourage consultands to transmit relevant risk information to relatives and support them throughout the communication process; however, there is lack of clarity regarding how this should be done. 8,9 There has been some discussion on how to cascade information about genetic health risks to the relatives of patients with familial hyper-cholesterolaemia, including the active contacting of relatives directly by professionals, although this depends entirely upon information provided by the proband.…”

“…(2) What are the actions taken by the professionals involved? (3) What are the characteristics and contents of the interventions specifically assisting consultands in their communication of genetic information to their relatives?.…”