Psychosocial Aspects of Genetic Testing for HNPCC

In order to gather important data on the psychosocial and behavioral aspects and sequelae of genetic counseling protocols for hereditary cancer, this investigation will study a consecutive series of approximately 1,000 index cases of Colorectal Cancer (CRC), identified at the UTMDACC, who will be offered molecular testing for hereditary nonpolyposis colon cancer (HNPCC) and participation in the study. From this series, approximately 65 carriers of HNPCC mutations, and 225 first degree relatives (FDRs) of those index cases will be enrolled. Spouses of FDRs (c.100) also will be enrolled in the psychosocial portion of the study. Finally, we will follow a sample of noncarrier index cases for psychosocial assessment in order to have carriers and noncarriers at all levels of the design. Major endpoints of the study will include completion of molecular testing; adherence to surveillance recommendations among carrier and noncarrier FDRs; and psychosocial indicators of distress and well-being. Four pilot studies will address important qualitative issues: a telephone 'counseling line' to deal with questions, concerns and problems; audiotaped counseling sessions as an educational intervention; process analysis of counseling sessions; and field trips to registry families to study family dynamics in risk notification and genetic counseling. (Member of CGSC)