Less than 2% of customers who purchase direct-to-consumer genetic testing regret receiving the information, and approximately 1% indicated that they were harmed by the information. Consumers have been increasingly able to learn more information about their genetics with such direct-to-consumer genetic testing, though critics worried that the information could be too challenging to interpret without help from an expert.1
“These data suggest that many of the concerns and criticisms about putting this information into the hands of consumers may presume an exaggerated likelihood of harm,” said first author J. Scott Roberts, PhD, associate professor of health behavior and health education at the University of Michigan School of Public Health, Ann Arbor, Michigan.
More than 1,600 people participated in the study, of which 74% were very interested in their ancestry. Information on traits and health risks was important to 72% of participants.
This research assessed perceptions and behaviors of people who received direct-to-consumer genetic testing from 2 different companies before the FDA mandated restrictions on the information provided in the results. The 2 companies were 23andMe and Pathway Genomics Corp.
Researchers conducted 3 internet surveys in 2012, with the goal of elucidating who was getting tested and how these people perceived harms, benefits, and limitations of the genetic data. Researchers also wanted to understand what motivated consumers to undergo genetic testing.
Almost 40% of respondents did not consider all the potential for unwanted information prior to testing.
“This suggests a need for improvement in the informed consent and pretest education process so that consumers appreciate the different types of information they might receive,” Roberts said.
After receiving the results, 59% of respondents indicated the information would affect how they managed personal health. Respondents were most interested in genetic risk information for heart disease, breast cancer, and Alzheimer’s disease, especially women and people with poor, self-reported health.
The overwhelming majority of respondents (93%) reported that genetic testing was the right decision, and 94% reported they would do it again.
1. Roberts JS, Gornick MC, Carere DA, Uhlmann WR, Ruffin MT, Green RC. Direct-to-consumer genetic testing: user motivations, decision making, and perceived utility of results. Public Health Genomics. 2017 Jan 10. doi: 10.1159/000455006. [Epub ahead of print]