What to tell the children? Social and behavioral aspects of disclosing parents' cancer genetic status

Genetic testing is key to the management of familial cancer risks in adulthood. Though BRCA1/2 testing in children is discouraged, our work suggests that children are informed of their tested mothers' mutation status; the circumstances and consequences of such disclosure can vary widely. Our research prospectively examines social and behavioral predictors and outcomes of parental disclosure decisions to children of BRCA1/2-tested mothers. Hereditary breast-ovarian cancer is a model condition in which to ask and answer timely questions about risks/benefits of predictive genetic testing, and forecast implications for other major chronic disease risks affecting whole families. We will review the results of our work in this area, including that >60% of tested mothers and >40% of nontested spouses rapidly inform children about familial cancer risk information. We will present the results of multivariate regression analyses concerning relationships between parental disclosure decisions and genetic carrier status, child age, and social/behavioral functioning, and the outcomes of disclosure. This is a large (N>340 parents) and well-characterized prospective study on this topic. Short-term rates of parental disclosure to children are high, and increase over time. It is critical to inform genetic and public health professionals about the array of parent/child risks/benefits of genetic information, and discuss opportunities for intervention to promote health and well-being. As increasing numbers of predictive genetic tests become available and are offered to the public, we must be more prepared to understand how the dissemination of such information may affect family life cycles, disease prevention efforts, and subsequent health behaviors.