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 hereditary cancer. Genetic counseling and testing for heritable CRC is a promising approach for reducing the high incidence and mortality rates associated with the disease. Patients with CRC or those with at least one family member with the disease are the most likely persons to request or be offered genetic testing in the clinical or research setting. Currently, however, little is known about the behavioral, psychosocial, ethical, legal, and economic outcomes of CRC genetic counseling and testing.


METHODS
Eight focus group interviews, four for CRC patients (n = 28) and four 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; strong concern for family members, particularly children; and a need for primary care providers to be informed about these issues. Major perceived advantages of genetic testing included improving health-related decisions, guiding physicians in making recommendations for surveillance, and informing relatives about risk potential. Disadvantages included potential discrimination, 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 in partnership with, those individuals most affected by 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.
Kinney
A Y
AY
University of Utah College of Nursing, Salt Lake City, Utah 84112, USA. kinney@nurs.utah.edu
DeVellis
B M
BM
Skrzynia
C
C
Millikan
R
R
D000328:Adult; D000368:Aged; D001290:Attitude; D002277:Carcinoma / Q000175:diagnosis* / Q000235:genetics*; D015179:Colorectal Neoplasms / Q000175:diagnosis* / Q000235:genetics*; D003219:Confidentiality; D003657:Decision Making; D005192:Family Health; D005260:Female; D017144:Focus Groups; D005817:Genetic Counseling; D005820:Genetic Testing; D015438:Health Behavior; D006801:Humans; D008297:Male; D008403:Mass Screening; D008875:Middle Aged; D010375:Pedigree; D011320:Primary Health Care; D012307:Risk Factors