The unraveling of the human genome has created a new industry that can genetically assess an individual’s innate health risks. Tests are now being offered by stand-alone labs and marketed directly to the consumer, rather than a physician.
As such, consumers are now faced with the decision of what they want (or prefer not) to know. Researchers have determined the decision to use mail-in genetic tests is based on both rational and emotional reasons.
University of California -Riverside investigators studied factors that either motivated or discouraged a consumer from participating in direct-to-consumer (DTC) genetic testing. UC Riverside psychologists found that potential users of the tests were influenced by perceived benefits and barriers to testing, and anticipated regret over testing versus not testing.
“We were interested in examining how people perceive DTC genetic testing and how information about the procedure might influence their interest in testing, not about the advantages or disadvantages of the testing procedure itself,” said lead author Dr. Kate Sweeny.
The paper appears in the online edition of the peer-reviewed journal Psychology & Health.
“DTC genetic testing provides a context to examine people’s decisions to seek or avoid information that could be potentially life-changing, but that only requires a relatively affordable fee to acquire,” she explained.
The study provides much-needed evidence to illuminate the processes that drive decisions to pursue or not pursue DTC genetic testing, and reveals how the manipulation of available information substantially affects perceptions about testing and intentions to test, say the authors.
Researchers discovered the decision to test or not to test is often driven by the slant of information provided to the individual.
People who received only positive information (the potential for increased knowledge or personal and family health risks) perceived the greatest benefits of DTC genetic testing. This group expressed regret over missing an opportunity to test and was eager to pursue testing.
Participants who received only negative information (lack of governmental regulation, the potential misinterpretation of genetic information) perceived greater barriers to testing, anticipated the greatest regret over testing, and did not differ from people who received both positive and negative information in their intentions to test.
“Our findings have important implications for both predicting and influencing decisions to pursue DTC genetic testing,” the researchers wrote, suggesting that “decisions regarding DTC genetic testing depend on some of the same considerations that drive other health behavior decisions.
The debate on genetic testing, and particularly testing that is marketed directly to the consumer (DTC) is ongoing. Experts caution of the lack of counseling following testing, the potential for misinterpretation of test results and the possibility of genetic discrimination.
Sweeny said the research data do not endorse or warn against DTC genetic testing.
“Rather, I see our findings as evidence that people who learn about the procedure seem to lean against pursuing it, even when they learn about both pros and cons of testing. I’m not saying that people should or shouldn’t test; rather, people in our study seemed particularly attentive to the disadvantages of testing, such that people who learned about both pros and cons were just as (dis)interested as people who only learned about the cons,” she said.
One conclusion of the study is that decisions about DTC genetic testing are similar in some ways to other types of health decisions, for example, that perceptions of costs and benefits of the behavior play a strong role in decision-making, Sweeny said.
“Furthermore, our study adds to a relatively recent trend in research on health behavior to focus on both beliefs (i.e., the more rational aspects of decision-making) and emotions. We found that both beliefs about DTC testing and anticipated regret about testing decisions were related to intentions to test, suggesting that people are guided by both rational and emotional considerations when they make these decisions.”