The decision to use direct-to-consumer genetic tests is influenced by people's rational and emotional perceptions about the benefits and risks of testing, a study by researchers at the University of California, Riverside, reported.
The study, published last month in Psychology & Health by Kate Sweeny of the University of California, Riverside, showed that people who received only information about the benefits of DTC genetic testing thought highly of it and anticipated the greatest regret over missing an opportunity to test. Those who received only information about the risks of DTC testing, or information about both the risks and benefits, perceived greater barriers to genetic testing and anticipated that they would regret choosing to test.
"Direct-to-consumer [genetic testing] is interesting because [most consumers] don’t know very much about it," Kate Sweeny, lead author of the paper and an assistant professor of psychology at UC Riverside, told PGx Reporter. "It’s becoming so completely available, but people don’t know that much about how you go about it, how much it costs, how effective it is."
The survey examined responses from 99 volunteers recruited online. Researchers divided the volunteers randomly into three so-called "information conditions" that were presented with either positive information about DTC genetic testing, negative information, or both positive and negative information.
Each study group read a short information overview as well as an additional paragraph depending on their assigned information condition. The positive information paragraph highlighted the benefits of testing, discussing accessibility of the data, alleviating privacy concerns, and calling the process "easy." The negative paragraph mentioned the risks of testing, including the possibility that test results may be misinterpreted, acknowledging that the process was "somewhat expensive" and informing study participants that the results may not be as accurate as advertised.
Participants in the positive group read only the positive information, and those in the negative condition read only the negative information. Those in the full information condition read both short paragraphs. All participants then answered a questionnaire rating their perception of the benefits and barriers of testing, their anticipation of regret, and their intention to test or not to test on a 9-point scale.
"We asked, 'Would you regret doing this? Do you think you’d regret missing the opportunity?' And then we asked people to evaluate how likely they were, essentially, to test — to pursue more information at least, and then to get tested," Sweeny said.
Comparing participants' reports of their perceptions, both rational and emotional, Sweeny found that volunteers who perceived benefits to testing and anticipated regret over not being tested showed a greater intention to test, while participants who reported perceiving barriers to testing and who thought they would regret being tested showed greater likelihood to avoid it.
The division between those who said they would and would not get tested was also linked to whether they had viewed positive or negative information on DTC testing. Positive information was associated with the decision to test, while negative information, as well as a mix of positive and negative, were both linked to the intention not to test.
According to Sweeny, while there were downsides to recruiting study participants online, seeking volunteers on the web likely created a study cohort that closely aligns with those who are most likely to seek out DTC genetic testing on their own in real life.
The study is one of a handful that have looked at consumer genetic testing, but is among the first to explore consumer decisions to undergo testing. Most of the emerging research on DTC genomics has focused on how consumers react to their genetic test results after they have already chosen to get tested. Along these lines. the Scripps Translational Science Institute earlier this year reported results from a study that suggested information from DTC genetic tests has little effect on patients' health-related behavior (PGx Reporter, 01/12/2011).
"I think there is a big need for that kind of research, especially with DTC genetic testing. One of the big criticisms is that you’re getting this in the mail or in an e-mail… but what do you do with that information once you get it?" said Sweeny. At the same time, looking at who decides to test and why or why not is also revealing, she said.
Following the US Food and Drug Administration's regulatory action last summer against several DTC genomics firms, an advisory panel this March advised the agency that DTC genetic tests "that could potentially inform medical care should not be provided to consumers without the involvement of a doctor." (PGx Reporter, 03/09/2011)
Sweeny's research provides a window into how people's perceptions about genetic testing can be reinforced by the types of information they receive from various sources, whether it is DTC genetic testing firms or healthcare providers. She said that she was surprised by how influential negative information was on study participants’ responses, especially the fact that the group that received both negative and positive information responded much like the group given only negative information.
"People who read all the information — positive and negative things about DTC genetic testing — looked a lot like the people who only got the bad information," she said. "[This] suggests, at least for this particular kind of testing, that maybe people are just predisposed away from it, at least right now."
Direct-to-consumer genetic tests are now available from numerous companies, including Decode Genetics' DecodeMe service and 23andMe.
According to Sweeny, these firms most likely have an interest in knowing why consumers would or would not choose to purchase their testing services, though any data they might have on customer decision making has not been publicly released. "It’s still very unclear whether it’s a good idea or not, or for whom, or under what circumstances to do this kind of testing," she said.
At the same time, understanding this decision making may also be important for health regulators and physicians advising consumers regarding DTC genetic testing.
"If we determine as a field that it’s a really good thing that people have this information, we need to know a little about what is appealing, what would encourage people to test. If we decide it’s really dicey and unethical, we may, as health promoters, want to steer people away from this," Sweeny said.
She said the study’s results aren’t meant to provide a rationale either for or against DTC genetic testing, but that they reveal avenues for influencing the decision to test in either direction.
"People’s apparent focus on the negative side of DTC genetic testing may be difficult to change with even balanced information," the study reported. "We do not attempt to resolve the ethical debate … but our findings suggest that discouraging DTC genetic testing may prove easier than encouraging people to undergo testing."
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