Psychological Aspects of Hereditary Cancer Risk Counseling and Genetic Testing

Abstract

Hereditary cancer risk counseling is the process of identifying families at risk for hereditary cancer syndromes with the ultimate goal of minimizing cancer-related morbidity and mortality. We review psychological and behavioral outcomes of counseling and genetic testing for widely studied cancer syndromes, such as hereditary breast and ovarian cancer and hereditary colorectal cancer, as well as newer areas of inquiry, such as hereditary melanoma. We review both short- and longer-term psychological outcomes, including perceived costs and benefits. Our review suggests that rather than constituting a new stressor to which people must respond and adapt, hereditary cancer risk counseling and genetic testing may instead be conceptualized as powerful tools that patients and their families may use in ongoing efforts to manage hereditary cancer risk. Specifically, hereditary cancer risk counseling and genetic testing promote sustained improvements in adherence to screening recommendations, as well as other risk-reducing behaviors such as prophylactic surgery, but do not appear to create lasting increases in depression or anxiety. Further, there appear to be different patterns of psychological outcomes that are likely shaped both by specific personal and familial antecedents of the decision to seek genetic testing and properties of the cancer syndromes themselves. We present an integrative framework for understanding these diverse outcomes that may guide the design of future studies, and we discuss methodological issues that may inform our understanding of psychological and behavioral outcomes. Such understanding will help maximize the benefits of personalized medicine for cancer prevention through early detection and treatment.