Study: Customers of commercial genomic testing services understand results more than expected

For the average person without a science or healthcare background, genetic testing results would be, seemingly, difficult to understand. But that doesn’t seem to be the case, if a new study is anything to go by. That’s good news for companies providing these services.

In one of the first large studies to measure consumer comprehension of health-related genetic tests from personal genomic testing companies, University of Michigan School of Public Health researchers found that people who used the services from 23andMe and Pathway Genomics generally understood the findings.

“Our main research aim was to assess how well customers understood several hypothetical genetic test reports. We found, for the most part, they were able to correctly interpret the scenarios we presented,” said Jenny Ostergren, lead author and doctoral candidate in health behavior and health education at the School of Public Health, according to a U-M news report.

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Although 23andMe’s testing is now approved, it was previously under scrutiny based on a warning from the Food and Drug Administration in 2013 when concerns about customers misunderstanding test results could lead to mismanagement of medication use.

The team who ran the study presented four hypothetical scenarios with sample genetic test reports to 1,030 customers of the two companies, U-M news reported. The reports included genetic risk for Alzheimer’s disease and Type 2 diabetes, carrier screening results for more than 30 conditions, specific carrier screening results for phenylketonuria (PKU) and cystic fibrosis and drug response results for a statin drug.

Patients overall had a high rate of comprehension with 79 percent correct interpretations of the information presented across the different scenarios. Researchers did point out that the education level of the participants was high, so it isn’t necessarily representative of a general population. That said, most customers of these services are well educated and have a higher than average income, according to Ostergren.

“We found those with better comprehension had high numeracy skills, more genetic knowledge and higher education overall. Older age was associated with lower comprehension,” Ostergren said. “Because of this, there may not be a one-size-fits-all approach to communicating this kind of genetic test information. Tailoring the presentation of this information based on individual characteristics or preferences and the type of test results could potentially enhance comprehension of results.”