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DTC Testing Survey Spotlights Acceptance and Concerns

By a GenomeWeb staff reporter

NEW YORK (GenomeWeb News) – More than 80 percent of people who used direct-to-consumer genetic risk tests in a new study said that they want to know their risks even for non-preventable genetic diseases, yet half of the people in that study also said that they have concerns about such tests, according to the American College of Medical Genetics.

In a study of 3,640 participants recruited by the Scripps Research Institute, who were pulled primarily from the institute's own ranks and from biotechnology and hi-tech companies, 82.4 percent said that they would want to know their risk for diseases, even ones they could not prevent, and 49.7 percent expressed a range of concerns about taking genetic tests.

The study results, reported in the September issue of Genetics in Medicine, involved giving the Navigenics Health Compass test to participants through an arrangement that provided the test at a discounted rate.

Of the participants, 12.7 percent said that they would want to know the results of genetic tests that included incurable disease risk if they could use the information to adjust their lifestyles, and 7.5 percent said that they would want to know in order to get their affairs in order.

Another 6.1 percent said that they "possibly" would want such information if the condition was not fatal, and 6 percent said that they would want to know if the condition may be far in the future.
None of those who took the test said that they "definitely do not want to know" the results of a genetic test for risk of a non-preventable disease.

The nearly 50 percent that expressed concerns about undergoing DTC personalized risk assessment, but who did join the study and take the tests, gave several reasons for their attitudes. The largest group, 36 percent, cited privacy issues about the data as their chief cause of concern.

The quality and the reliability of the data bothered 16.5 percent of participants, and 16.2 percent were worried that they would not know how they would feel about the results. Another 13.1 percent of participants said that their main concern would be learning about their risk of disease.

While the number of concerned participants implies that another 50 percent did not have concerns, the study notes, this group represents a "best-case scenario" because it only includes people who agreed to take the tests and went through with them, and the numbers in the broader public may show greater levels of concern.

That those who took the test show less concern, the study's authors propose, shows that the clinical validity and the utility of genome-wide association study-based risk assessments could be important factors in genomic medicine.

"Given that concerns vary among different subgroups of consumers, if the clinical validity and utility of these tests are demonstrated, tailored genetic education and counseling services may be of benefit," Scripps Genomic Medicine Researcher Cinnamon Bloss, lead author of the study, explained in a statement.

Older people in the survey were less likely to express concerns about the tests, and people who had lower levels of anxiety about particular traits also were less likely to have worries.

"A possible explanation for this age pattern could be that the more years a person has lived, the more one already knows about their health and the diseases they will develop; thus, older individuals are less likely to receive risk information that is surprising or that may seem ominous," the authors explained. "In regard to the trait anxiety finding, it is fairly intuitive that the more anxious one is by nature, the more one will experience general worry, including worry related to genetic testing," they added.

As for the findings that half of those who took the test still had reservations based on specific concerns, the authors suggested that genetic counseling may benefit all consumers of DTC genetic tests.

The authors also addressed the issue of the expanding availability of these tests and whether or not they should be regulated, although the survey did not cover that line of questions.

The paper notes that while "compelling arguments for increased regulation" have been made, others have pointed out that "too much regulation may limit future, and as yet unforeseen, benefits associated with DTC GWAS-based genetic testing and society might actually be better served with minimal regulation to allow users in the marketplace to experience its benefits and fine tune its weaknesses."