Comprehension and Data-Sharing Behavior of Direct-To-Consumer Genetic Test Customers

Area of Science:

• Genetics
• Consumer Health
• Bioinformatics

Background:

• Direct-to-consumer (DTC) genetic testing offers personalized health insights.
• Interpreting complex genetic data poses challenges for the general public.

Purpose of the Study:

• To assess DTC genetic testing customers' comprehension of their test results.
• To determine the necessity of genetic counselors or "honest brokers" for result interpretation.

Main Methods:

• An online survey of 122 23andMe customers.
• Subjects interpreted personal and mock test cases (type 2 diabetes, multiple sclerosis) with probabilistic risk data.
• Statistical analysis included chi-squared and logistic regression.

Main Results:

• 72.1% and 77% correctly interpreted individual mock cases, but only 23.8% interpreted both accurately.
• Reading supplemental materials increased correct interpretation odds by 3.93 times (p=0.040).
• Higher income (>$50,000) correlated with 3.289 times higher odds of correct interpretation (p=0.011).

Conclusions:

• While many users can interpret individual genetic risk factors, comprehensive understanding remains a challenge.
• A majority of users do not discuss DTC genetic test results with healthcare professionals.
• Increased involvement of healthcare professionals is recommended to ensure accurate interpretation as DTC genetic testing expands.