Few Use Follow Up Services After Genetic Testing
May 18, 2012

Few Use Follow Up Services After Genetic Testing

Connie K. Ho for RedOrbit.com

Recently, genetic tests have been on the rise and are offered by more and more commercial producers. While there are many opportunities for people to participate in genetic testing, this doesn´t necessarily mean that people are following up on those services. These are the results found in a study that is published in the May 17 issue of Genetics in Medicine.

The study was a collaborative project by the Multiplex Initiative, which includes researchers from the National Institutes of Health's Intramural Research Program, the Group Health Cooperative, and the Henry Ford Health System. Researchers analyzed variants of genes related to diseases such as colorectal cancer, coronary heart disease, high blood cholesterol, hypertension, lung cancer, melanoma, osteoporosis, and type 2 diabetes. The study allowed researchers to better understand patients´ health care needs.

"Our study was a best-case scenario, because we chose 15 genes reliably associated with relatively small risks for eight common diseases that health behaviors can affect," remarked lead author Dr. Robert J. Reid in a prepared statement. "We hope that testing positive activates patients to make behavior changes that could lower their risk, such as quitting smoking without causing them to make many extra visits to their doctors."

The report was one of the first studies that looked at electronic health records, as opposed to self-reported behavior, to quantify the impact of genetic testing on health services chosen by adults.

"We need to understand the impact of genomic discoveries on the health care system if these powerful technologies are going to improve human health," explained Dr. Dan Kastner, scientific director and head of the National Human Genome Research Institute's (NHGRI) Division of Intramural Research, in a statement. "We are still learning how to integrate new genomic discoveries into clinical care effectively and efficiently.”

Genetic tests are also important because they can find variants of genes related to the changes in the risk of developing a particular disease.

"Understanding personalized genetic information is important because it is becoming more readily available and we need to figure out how to integrate it effectively and efficiently into the clinical care we provide," noted coauthor Dr. Eric B. Larson in a prepared statement.

The scientists hope to continue to research consumer interest of genetic testing and how that affects patients´ long-term health care goals.

"Good next steps would be to see whether any patients were motivated to make long-term behavior changes–and whether those individuals at highest risk went to their doctors more often," continued Reid. "But this study wasn't designed to answer those questions."

The initiative was started in May 2007 and, for two years, researchers gathered information from 2,000 Detroit residents. When they were enrolled in the project, the participants reviewed information on the multiplex genetic test and then decided if they wanted to take the test or not. People who agreed to take the tests met with a research educator who went over the different points of the exam as well as gave the benefits and drawbacks of the exam. Test results were then mailed to participants and a research educator contacted the participants to help them interpret the exam results. A follow-up interview was done three-months after the genetic exam.

Overall, 217 healthy people between the ages of 25 and 40 participated in the study and elected to undergo genetic susceptibility testing that was covered by their health insurance programs. The researchers looked at the participants´ health care use 12 months before and after the genetic testing. During this time, researchers recorded the number of doctor visits, lab tests, and procedures the participants received, especially any services related to four of the eight genetic conditions. The participants were also compared to 400 other people who had similar health care plans, but opted not to participate in the genetic testing. Results showed that participants did not change overall health care use after the genetic testing.

"There are a lot of unanswered questions about how genetic test results can be used to guide people toward making positive lifestyle and health behavior changes," commented Dr. Colleen McBride, chief of the Social and Behavioral Research Branch at NHGRI, in a statement. "This study goes a long way toward bringing data to these debates and shows that people are not likely to make inappropriate demands of health delivery systems if they are properly informed about the limitations of genetic tests."