Genetic testing for colorectal carcinoma susceptibility - Focus group responses of individuals with colorectal carcinoma and first-degree relatives

BACKGROUND. Colorectal carcinoma (CRC) may be the most frequent form of her editary cancer. Genetic counseling and testing for heritable CRC is a promi sing approach for reducing the high incidence and mortality rates associate d with the disease. Patients with CRC or those with at least one family mem ber with the disease are the most likely persons to request or be offered g enetic testing in the clinical or research setting. Currently, however, lit tle is known about the behavioral, psychosocial, ethical, legal, and econom ic outcomes of CRC genetic counseling and testing. METHODS, Eight focus group interviews, four for CRC patients (n = 28) and f our for first-degree relatives (n = 33), were conducted to obtain insights into attitudes, beliefs, and informational needs about genetic testing for hereditary CRC. RESULTS. Focus group interviews revealed a general lack of knowledge about cancer genetics and genetic testing; worry about confidentiality issues; st rong concern for family members, particularly children; and a need for prim ary care providers to be informed about these issues. Major perceived advan tages of genetic testing included improving health-related decisions, guidi ng physicians in making recommendations for surveillance, and informing rel atives about risk potential. Disadvantages included potential discriminatio n, adverse psychologic effects, and financial costs associated with testing . CONCLUSIONS. As knowledge and media coverage of genetics continue to expand , it becomes increasingly important to continue efforts on behalf of, and i n partnership with, those individuals most affected bp genetic testing for hereditary cancer syndromes. These findings provide data needed to develop and implement informational, educational, counseling, and research-oriented programs that are sensitive to individuals' concerns and preferences.