Risks and Benefits of Direct-to-Consumer Genetic Testing Remain Unclear

Impact of Direct-to-Consumer Predictive Genomic Testing on Risk Perception and Worry Among Patients Receiving Routine Care in a Preventive Health Clinic

“…In contrast to concerns raised in the scientific literature 9,12,29 and by organizations such as the American Society of Human Genetics, 30 the American College of Medicine Genetics, 31 and the Secretary's Advisory Committee on Genetics, Health, and Society, 32 we found no significant differences in levels of worry for 10 of the 12 conditions tested comparing patients who received predictive genomic risk information with those who received usual care; differences merely approached statistical significance for the remaining 2 conditions (prostate cancer and osteoarthritis). These findings are not unlike those recently reported by Bloss et al, 33 who found that genome-wide testing in a nonclinical setting had no measurable impact on psychological health or behavior.…”

Virtual research visits and direct-to-consumer genetic testing in Parkinson’s disease

“…Remote recruitment and conduct of research visits in individuals who have undergone DTC genetic testing is feasible, shows relatively good agreement with self-reported data, and is well received by participants. While the benefits of DTC genetic testing continue to be debated, 1 , 2 , 11 , 31 – 39 this proof of concept study demonstrates its potential to identify, follow, and engage geographically dispersed populations with a given disorder and an underlying genotype in research. 40 Our 32% response rate to a single recruitment email suggests that targeted electronic recruitment in populations unrestricted by geography may improve participation in research studies.…”

Which Disease and Individual-Based Factors Predict Intentions to Undergo Whole Genome Sequencing?

“…Moreover, the desire to reduce health-related uncertainty can be a potentially motivating factor in this setting. Thus, WGS providers must promote awareness that screening results may find a very small increased risk of disease with no clear course of action [31] to counteract misconceptions about the predictive power of WGS [32].…”