21 August 2007
A paper published in the Journal of Clinical Oncology reports the findings of a US study looking at disclosure of BRCA mutation status (and hence information on familial risk) by parents to children under the age of 25. Carrier status for BRCA mutations in women carries a lifetime risk of up to 85% for breast cancer and 41% for ovarian cancer.
Interviews with 42 mutation carriers from the University of Chicago Cancer Risk Clinic showed that around half of them had discussed familial cancer risk and/or revealed their own mutation status to their children, with such disclosures more commonly occurring to adolescent or adult children than younger children [Bradbury AR et al. (2007) J Clin Oncol. 25(24):3705-11]. The decision to inform children was largely taken without consultation with a clinician (14% of respondents) or genetic counsellor (21% of respondents). Around half of the parents who told children of their own mutation carrier status reported that they did not appear to understand the significance of the information shared, and a similar proportion reported negative reactions such as anxiety and distress. However, only a third of parents said that they thought it would be helpful for their offspring to see a genetic counsellor.The authors propose that further research is required to assess the comprehension and psychosocial impact of hereditary cancer disclosure in young individuals.
Comment: Although very small, this study raises the interesting question of motivation to disclose genetic test results to family members, since (as with other adult-onset disorders), the children were too young for useful clinical interventions to reduce their own risk of disease. Rather, some mutation carriers suggested that the genetic information was of value to their offspring in its own right. More worrying is the possibility that even teenage and adult children may have failed to understand the potential implications of hereditary cancer, suggesting that communicating risk to family members should be considered as part of the process of genetic counseling and testing.