Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer

Abstract

In familial breast/ovarian cancer, the information that the proband is able to supply about other family members is of critical importance for genetic counseling. This frequently requires family communication. Forty-six women attending a cancer genetics clinic were interviewed as part of a longitudinal study. Nearly all reported affected maternal, rather than paternal relatives, which may indicate lack of awareness by women with paternal histories. There was also much more communication among female relatives. Mothers, where they were still alive, were key figures in supplying family information. Although the majority of the sample contacted at least one relative regarding counseling, most named a relative with whom they did not feel able to communicate on this subject. Probands balanced the perceived obligation of passing on information with that of not causing alarm. Communication, both obtaining and giving information, was impeded by adoption, divorce and remarriage, family rifts, and large age gaps between siblings.

Patients’ Understandings and Experiences of Familial Hypercholesterolemia

“…As with other studies of the family communication of genetic information [see for example [47,48,49]], participants talked of informing family members that they were closest to, either emotionally or geographically. This mostly included siblings, but sometimes included wider kin.…”

Why Do They Do It?

“…The fact that women have traditionally been ‘kin keepers’ of families’ histories [44,45,46] and health histories [32] is also pertinent to our study. Most participants said that they had open family discussion about genetics, but this could be a bias in our sample.…”

Family Communication about Genetic Risk: The Little That Is Known

“…Family communication is important in clinical genetics: it may influence the accuracy of information brought to a consultation; the issues raised by communication or non-communication may lead to emotional distress; and non-disclosure of relevant information undermines the decision-making autonomy of at-risk relatives [1, 2, 3]. Health care professionals may also feel they have to undermine their duty of confidentiality to an individual if they judge that an at-risk relative needs to know about a potential genetic susceptibility [4, 5, 6].…”

“…Firstly, patients have been observed to inaccurately report details of their family history [1, 2]which may be particularly important if risk estimates are primarily based on such information [33]. Secondly, where genetic testing is available, blood samples may be needed from affected family members, requiring negotiation between relatives [34].…”