Proband family uptake of familial-genetic counselling.

Abstract

Familial-genetic counselling for breast/ovarian cancers is a process initiated by a proband, and designed for all her/his blood relatives. This study focused on family members' uptake of an invitation to participate in counselling as a function of proband and family determinants. Of 163 breast/ovarian syndrome families tested, 67 carrying one of the three known Jewish mutations were included. For both the proband and family members, demographic variables, cancer status, position in the family and type of referral (proband only) were examined. Eligible family members' uptake rate was 34%. Lower family uptake was associated with the proband having cancer, and/or being doctor-referred (vs self-referred). Individuals of either the proband's or older generations had lower uptake rates compared with family members of younger generations. Being a cancer patient or a first degree relative of either a cancer patient or the proband was related to higher uptake. The study results indicate that baseline information routinely gathered by counselling services can be useful in predicting uptake. Providing insight into complex barriers to genetic counselling, these results also suggest potential directions for interventions to improve uptake, thereby enhancing individuals' abilities to make informed decisions regarding issues such as genetic testing.