Consumers of commercial genetic tests understand more than many believe

June 23, 2015 by Terri Mellow, University of Michigan

Those who have doubted the ability of customers to understand results of personal genomic testing may have been selling them short, researchers at the University of Michigan School of Public Health have found.

In one of the first large studies to measure customer comprehension of health-related genetic test reports from personal genomic testing companies, U-M researchers found that overall people were able to understand this information.

"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 at the School of Public Health.

Participants in the research were the customers of 23andMe Inc. and Pathway Genomics. Results of the research are reported in the current issue of Public Health Genomics.

Since the first personal company started in 2006, questions have been raised about sharing this kind of information with the public without someone to interpret it. Several leading governmental agencies have said that such information in the hands of the public could lead to psychological harms and misuse of health-care system resources.

The Food and Drug Administration sent a warning letter in November 2013 to 23andMe raising concerns that misunderstandings of the tests could lead to patient noncompliance or mismanagement of medications. The genetic testing company stopped selling its health-related reports from personal genetic tests to customers in the U.S. shortly thereafter, and now only provides ancestry data.

Earlier this year, the FDA approved one of the company's tests, which allows a healthy person to find out if he or she has a genetic variant that could lead to a serious disorder in offspring.

In this study, the U-M-led team presented four hypothetical scenarios with sample genetic test reports to 1,030 customers of the two companies. 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.

Participants had high overall comprehension of the information presented, with an average score of 79 percent correct across scenarios, and scored extremely high on their understanding of statin drug response and carrier screening results, ranging from 81-to-97 percent. They were less certain about specific screening results for PKU, with scores from 64-to-75 percent, which the researchers said may be due to a lack of understanding about recessive traits.

Participants also scored lower on questions about the diabetes scenario, which researchers believe was because the description of the hypothetical person as "obese" clouded the bigger picture of the results.

"In general, people did fairly well across these scenarios so some of the concerns that people won't be able to handle the information on their own might be unfounded," said senior author Scott Roberts, U-M associate professor of health behavior and health education, who added, however, that the relatively high education level of the population taking the survey must be considered.

"This was a highly selected group of people overall, so we can't really say how a more diverse group would fare," said Roberts, who also is director of the Genomics, Health and Society Program at the U-M Center for Bioethics and Social Sciences in Medicine.

Overall, the customers of these services are predominantly white and have higher levels of education and income than the general population, Ostergren said.

"We found those with better comprehension had high numeracy skills, more genetic knowledge and higher education overall. Older age was associated with lower comprehension," she 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 of results."

Explore further: New study launched investigating the impacts of personal genomic testing

More information: "How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study." Public Health Genomics. DOI: 10.1159/000431250

Related Stories

New study launched investigating the impacts of personal genomic testing

March 5, 2012
As genetic risk information plays an increasingly important role in the diagnosis and treatment of many diseases, private companies have made personal genomic testing for these risk factors widely available to the public. ...

23andMe authorized by FDA to market first direct-to-consumer genetic test

February 20, 2015
Feb23andMe today announced that it has been granted authority by the U.S. Food and Drug Administration (FDA) to market the first direct-to-consumer genetic test under a regulatory classification for novel devices.

Genetic test maker 23andMe launches drug R&D effort

March 12, 2015
Google-backed genetic testing company 23andMe is launching its own drug development unit, betting that it can translate its database of customer DNA information into novel medicines.

Canadians' preferences for receiving incidental findings from genetic testing

March 9, 2015
Although many people value receiving information about incidental findings identified from genomic sequencing, not everyone wants to know about genetic conditions regardless of potential health implications, found a study ...

Putting the brakes on home genetic testing: Four questions with geneticist Scott Diehl

December 4, 2013
The Food and Drug Administration recently ordered an end to sales of the home genetic testing kit 23andMe. FDA medical experts said the kit's manufacturers had failed to prove their claim that the $99 test can help customers ...

Study explores drug users' opinions on genetic testing

September 23, 2014
Genomic medicine is rapidly developing, bringing with its advances promises of individualized genetic information to tailor and optimize prevention and treatment interventions. Genetic tests are already guiding treatments ...

Recommended for you

Shared genetics may shape treatment options for certain brain disorders

June 20, 2018
Symptoms of schizophrenia and bipolar disorder, including psychosis, depression and manic behavior, have both shared and distinguishing genetic factors, an international consortium led by researchers from Vanderbilt University ...

Simple sugar delays neurodegeneration caused by enzyme deficiency

June 20, 2018
A new therapeutic approach may one day delay neurodegeneration typical of a disease called mucopolysaccharidoses IIIB (MPS IIIB). Neurodegeneration in this condition results from the abnormal accumulation of essential cellular ...

Scientists unravel DNA code behind rare neurologic disease

June 20, 2018
Scientists conducting one of the largest full DNA analyses of a rare disease have identified a gene mutation associated with a perplexing brain condition that blinds and paralyzes patients.

Targeting the engine room of the cancer cell

June 18, 2018
Researchers at Columbia University Irving Medical Center (CUIMC) have developed a highly innovative computational framework that can support personalized cancer treatment by matching individual tumors with the drugs or drug ...

Scientists learn more about how gene linked to autism affects brain

June 18, 2018
New preclinical research shows a gene already linked to a subset of people with autism spectrum disorder is critical to healthy neuronal connections in the developing brain, and its loss can harm those connections to help ...

161 genetic factors for myopia identified

June 15, 2018
The international Consortium for Refractive Error and Myopia (CREAM) recently published the largest-ever genetic study of myopia in Nature Genetics. Researchers from the Gutenberg Health Study at the Medical Center of Johannes ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.