Controversies in communication of genetic risk for hereditary breast cancer

Abstract

Increased availability and heightened consumer awareness of "cancer genes" has increased consumer interest in, and demand for breast cancer risk assessment, and thus a pressing need for providers to identify effective, efficient methods of communicating complicated genetic information to consumers and their potentially at-risk relatives. With increasing direct-to-consumer and -physician marketing of predictive genetic tests, there has been considerable growth in web- and telephone-based genetic services. There is urgent need to further evaluate the psychosocial and behavioral outcomes (i.e., risks and benefits) of telephone and web-based methods of delivery before they become fully incorporated into clinical care models. Given the implications of genetic test results for family members, and the inherent conflicts in health care providers' dual responsibilities to protect patient privacy and to "warn" those at-risk, new models for communicating risk to at-risk relatives are emerging. Additional controversies arise when the at-risk relative is a minor. Research evaluating the impact of communicating genetic risk to offspring is necessary to inform optimal communication of genetic risk for breast cancer across the lifespan. Better understanding the risks and benefits associated with each of these controversial areas in cancer risk communication are crucial to optimizing adherence to recommended breast cancer risk management strategies and ensuring psycho-social well-being in the clinical delivery of genetic services for breast cancer susceptibility.