Discrepancy Between Initial High Expression of Interest in Clinical Cancer Genetic Testing and Actual Low Uptake in an Asian Population

Abstract

Aims: Little is known about the acceptance of clinical cancer genetic testing in Asians. We surveyed the attitudes and perceived motivators and barriers to genetic testing immediately after genetic counseling in at-risk patients for hereditary cancer in a cancer genetics clinic in Singapore, and compared the responses of actual test acceptors and decliners. Results: Three hundred seventeen patients participated, including 199 cancer-affected and 118 cancer-free probands or family members. Overall, 70% of patients expressed an initial willingness to be tested, and most did not perceive major barriers. However, only 69/199 (35%) of cancer-affected probands were actually tested. There was no significant difference in age, education, marital status, or initial expression of negative feelings toward genetic information between the test acceptors and decliners, although the decliners were more likely to have indicated a wish not to be tested (22% vs. 4%, p<0.001) and cited cost as a barrier (32% vs. 12%, p=0.002). The most common actual reasons against testing were cost (60%), not wanting to bear the emotional burden of genetic information (16%), and the perception that the medical management will not change (16%). Conclusion: A significant discrepancy exists between an initial high interest in testing and actual low uptake. Health programs that address cost issues and education to correct misperceptions may improve genetic information utilization.