Puerto Ricans Shy Away From Genetic Testing

PHILADELPHIA— Awareness of genetic testing was higher among adults in Puerto Rico compared to previous U.S. population-based studies, while use of genetic testing was lower, according to data presented at the Third AACR Conference on the Science of Cancer Health Disparities.

Genetic tests are increasingly being offered direct-to-consumers through the Internet and other venues, providing individual access to genetic tests without the involvement or consultation of a health care provider. Researchers analyzed data from the Health Information National Trends Survey (HINTS) conducted in Puerto Rico in 2009. Adults were asked whether they had heard or read about genetic tests offered by companies that analyze DNA, diet and lifestyles for potential health risks.

“This study is the first to measure awareness and use of direct-to-consumer genetic tests among adults in Puerto Rico, and to identify factors associated with awareness in this population,” said Ana P. Ortiz Martinez, M.P.H., Ph.D., associate professor and researcher in the department of biostatistics and epidemiology at the University of Puerto Rico Cancer Center and Graduate School of Public Health, University of Puerto Rico.

“While 56 percent of those surveyed were aware of these tests, only 4.3 percent had ever used one,” said Ortiz, who led the study. “No differences were seen by age or sex, nor was a personal or family history of cancer associated with greater genetic testing awareness.”

By comparison, two previous studies showed lower awareness in the United States. In 2006, only 14 percent of adults said they were aware of genetic testing, according to data from a U.S. HealthStyles national survey. Awareness increased to 29 percent in the 2007 U.S. HINTS survey.

Although causal attributions cannot be determined from these data, the greater awareness and use of genetic testing observed in Puerto Rico relative to mainland estimates coincides with greater push and availability of such tests over time. These data underscore and inform the imperative for population-based outreach and education efforts to provide accurate and balanced information about the risks and benefits of testing.

Use of genetic testing in the 2009 Puerto Rico HINTS survey was lower (4.3 percent) compared with the 2007 U.S. survey (8.1 percent), but higher compared with the 2006 U.S. survey (0.6 percent).

Married people — and those who had ever been married or were living together — were more likely to be aware of direct-to-consumer genetic tests compared with those who never married. Individuals who had sought cancer information were twice as likely to be aware. Smokers were among the least likely to know about genetic testing.

“Further studies will elucidate the use of genetic tests in clinical settings, and evaluate attitudes and beliefs about them,” Ortiz said. “As our understanding of their usefulness increases, we must assure access for everyone who may benefit, so that genetic testing will not become a source of health disparity in the population.”