Direct from consumers: A survey of customers of three direct-to-consumer personal genomic testing companies

Purpose: To collect empirical data about customers' experiences with direct-to-consumer (DTC) genomic tests, a survey of 23andMe, deCODEme, and Navigenics customers was conducted. Methods: 1,048 U.S. customers who received DTC results between June 2009 and March 2010 completed an online survey about their experiences and interpreted two sample genetic test results from the company they used. Results: The top reasons for using DTC genetic testing were to satisfy curiosity (94% very or somewhat important) and to learn about elevated risks of disease (91%). Twenty-nine percent had shared results with a health care provider or sought a follow-up test. Although 88% agreed their risk report was easy to understand, 38% said the conclusions were too vague. Between 4% and 7% misinterpreted examples of companies' risk results. One-third said learning about a 25% lifetime risk of diabetes (compared to 30% in the general population) would make them feel they were at low risk; 63% and 3% would consider themselves to be at moderate and high risk, respectively. Given a result of 11% lifetime risk for colon cancer (compared to 5% population risk), 45%, 42%, and 13% would consider themselves to be at high, moderate, and low risk, respectively. Forty-six percent would make a doctor's appointment to discuss the colon cancer risk; 10% to discuss the diabetes risk. Conclusions: Early adopters of genomic DTC tests indicate general satisfaction with their company's services. Long-term follow-up of DTC test users is needed to evaluate the impact of DTC testing on health care usage and behavior.