DIRECT-TO-CONSUMER Genetic Test COMPANY WEBSITES DON’T PResent BALANCE OF BENEFITS and RISKS
Studies Published in Special Edition of Journal of Genetic Counseling Suggest DTC Genetic Testing Has a Long Way to Go
Companies that offer direct-to-consumer (DTC) genetic tests are far more likely to trumpet the benefits of the tests than reveal their risks or limitations, according to a content analysis of 23 websites published in the June issue of the Journal of Genetic Counseling.
Benefit statements outweighed risk statements six to one, and while all of the websites listed benefits, only 35 percent included any mention of the risks associated with genetic testing, according to research published in the article. When consumers opt to use DTC tests to learn about their genetic information – whether out of curiosity or the desire to change their behavior and improve their health – they may not understand or be prepared for the potential downsides, including anger, depression or anxiety, and family tension when genetic information is revealed.
The special issue of the Journal includes 15 articles on DTC testing, addressing topics from what consumers do once they have those results to racial and ethnic differences in awareness of the tests.
Consumers can purchase tests that purport to measure the risk of developing heart disease, diabetes, cancer, Alzheimer’s or other diseases or conditions. They send a swab from the inside of the cheek or drop of blood to the laboratory for processing, and they are then sent the results but may not fully understand what they mean, or how they influence their lives.
“With little regulation, direct-to-consumer testing can leave consumers without any real guidance, leading to misconceptions, anxiety, and even a false sense of reassurance,” said Brenda Finucane, MS, CGC, a certified genetic counselor and president of the National Society of Genetic Counselors (NSGC), which publishes the Journal. “People really need to think carefully before using these tests, and we recommend that they talk to a genetic counselor or other qualified health professional to decide whether testing is right for them, and if so, how to interpret the results so they are most beneficial.”
DTC Websites Mention Lots of Pros, Few Cons
The study looked at 23 websites of companies offering DTC genetic testing. Overall, the sites included an average of 26 benefits statements, such as disease prevention, consumer education, personalized medical recommendations and the ability to make health decisions. The sites averaged only 1.04 risk statements – such as potential for worry and anxiety, genetic discrimination or threats to privacy – and two websites mentioned risks only by stating that there are no risks involved in genetic testing.
“We found most company websites did not provide a balanced representation of benefits, risks and limitations and, in fact, we were truly surprised that the ratio was so skewed. We’re hoping our research helps encourage the creation of regulations or policies to protect consumers,” said Kimberly A. Kaphingst, Sc.D., senior author of the article and assistant professor in the Division of Public Health Sciences, Washington University School of Medicine, St. Louis. “On the positive side, we were pleased to see that 70 percent of the websites recommended consumers contact a health care professional when making decisions about genetic testing.”
Findings of the study include:
- 100 percent of websites listed benefits and the most common were: prevention (96 percent of websites); consumer education (83 percent); personalized medicine (74 percent); and help in making informed decisions (52 percent).
- 35 percent of websites listed risks, with the most common being potential for worry and anxiety (26 percent of websites), and the potential for genetic discrimination or threats to privacy (17 percent).
- 78 percent of websites listed at least one limitation of genetic testing, with an average of 3.17 such mentions. Limitations listed included lack of clinical use for the results (74 percent of websites); the fact that development or progression of disease involves other factors in addition to genetic predisposition (30 percent); and lack of scientific understanding of genetic tests (30 percent).
In other DTC studies published in the special edition of the Journal:
- In-depth study of public understanding of genetic information and risk perception: In this study, 60 people were interviewed to learn whether they made behavior changes as a result of genetic testing. According to the findings:
- 42 percent shared their results with a health care provider and 23 percent said they planned to do so
- 1/3 said they made a change in their lifestyle based on the results, although most said the results provided additional motivation to do something they already knew they should do, such as use more sunscreen
- 1/3 said they planned to change their behavior
- 1/3 said they had no intentions of changing their behavior
“We found people actually handle this information quite well, and there doesn’t seem to be an overly deterministic or fatalistic reaction,” said Erynn Gordon, MS, CGC, lead author of the study, certified genetic counselor and director of genetic counseling at the Coriell Institute for Medical Research, Camden, NJ. “But we also found people are putting more emphasis on genetic information than other risk factors, even though other risk factors – such as quitting smoking or losing weight – may be more important.”
- Large survey of understanding of genetic information and perception of risk: A Johns Hopkins online survey of 1,048 customers of DTC genetic testing sought to determine how consumers interpret results and then use that information to influence their health care and behavior. Results of this quantitative survey found:
- 43 percent sought additional information about a health condition tested
- 28 percent discussed their results with a health care professional
- 16 percent changed a medication or supplement regimen
- 1/3 said they were being more careful about their diet
- 14 percent said they were exercising more
- 12 percent said DTC tests were not easy to understand
“About a quarter of people said they had talked with their primary care physician, which suggests most people didn’t learn information that they needed to rush to the doctor to talk about,” said David Kaufman, Ph.D., director research and statistics at the Genetics and Public Policy Center at the university. “Also, people perceived the same information differently, meaning their personal circumstances determine how they interpret the results.”
- Number literacy may be more important than race, ethnicity in DTC awareness: In this study, researchers performed a secondary analysis of the National Cancer Institute’s 2007 Health Information National Trends Survey (HINTS) of 6,754 people. They found that respondents’ numeracy – their ability to understand numbers, apply meaning to them and use them to make decisions about their health – was a major factor in awareness about DTC testing, rather than their race or ethnicity. In other words, people who said they did not depend on numbers and statistics to help them make health decisions were less likely to be aware of DTC tests.
“When we present genetic information to people, they may not have an understanding to put it in context and we need to offer that information in different formats,” said Aisha Langford, MPH, doctoral candidate at the University of Michigan School of Public Health, Ann Arbor. “We need to consider more palatable ways than probabilities and odds ratios and percentages that consumers can use to make meaningful decisions.”
About the National Society of Genetic Counselors
NSGC is the leading voice, authority and advocate for the genetic counseling profession, representing more than 3,000 health professionals. The organization is committed to ensuring that the public has access to genetic counseling and genetic testing. For more information, visit www.nsgc.org.
NSGC Media Contact:
Public Communications Inc.