Parents Want Genetic Testing for Kids

April 18, 2011

A recent study reported that parents are inclined to support genetically testing their child for common conditions.

It was reported that parents taking genetic testing into consideration to predict their own risks for common ailments are also inclined to support genetically testing their child, according to a recent study.

"The more a parent believes they're going to get good news, the more likely they'll want their kids to be tested," reported leading study author Colleen McBride, chief of the social and behavioral research branch of the National Human Genome Research Institute, in Washington, D.C. "But that can backfire. Most of them are not going to get a clear, straight-A report card."

The study was a component of a greater endeavor by the National Human Genome Research Institute and was published online on April 18th, 2011 in advance of the May print issue of the journal Pediatrics.

Aiming to investigate the potentially problematic matter of Direct-to-Consumer (DTC) genetic testing, researchers examined the 219 responses from parents involved in the study, who were all enrolled in a large health plan.

Each participant was asked via telephone about their beliefs concerning the risks and benefits of preemptive genetic testing on themselves as well as their children, though no children were tested during this study. They were offered genetic testing to assess susceptibility to eight diseases which typically occur over the duration of adulthood. These diseases included colon, skin, and lung cancer; osteoporosis; elevated blood pressure; type 2 diabetes; high cholesterol; and heart disease.

The study found that parents were more likely to desire genetic testing on their children if one of three scenarios held true: 1) they were under the belief that the child was at risk for a condition, 2) they were interested in the effect genes have on health, or 3) they anticipated relief from learning that their child was at a decreased level of risk for certain diseases. The study also found that mothers were more likely to want their children tested than fathers were.

Parents who wanted the testing generally expressed the belief that the information would be greatly helpful in leading to better health maintenance and disease prevention; McBride, however, warns that the nature of the testing involves measuring incremental risks, and the diseases screened for are so relatively common that a majority of parents would receive the information that their child is at risk for a potentially serious condition.

"The assumption is the tests are conclusive . . . and nothing could be further from the truth," said Dr. Robert Saul, senior clinical geneticist and training program director at the Greenwood Genetic Center in South Carolina; Saul is also incoming chair of the American Academy of Pediatrics' Committee on Genetics.

According to experts, the DTC genetic tests (which have been acclaimed as one of the greatest inventions of the 21st century) do not always generate consistent results and are easy to misinterpret without appropriate medical guidance. Unfortunately, it is painfully simple for patients to acquire these tests without ever having to consult their primary care physicians.

DTC genetic testing has increased significantly in popularity over the last decade. The process usually is separate from medical professionals and insurance companies, unless a blood test is needed, as is some cases. The consumer most often will have the product advertised to them directly through a television or magazine ad and will order the product, which will be delivered to them through the mail; it will then require a DNA sample (often through a cotton mouth swab) which is then mailed into a recipient for processing, all of which can be done without any medical consultation on behalf of the patient.

These tests do not come cheap—they can range anywhere from a few hundred dollars to well over one thousand.

The American College of Medical Genetics created a statement concerning DTC genetic testing, citing minimum requirements for any patient who wishes to choose this path of testing; the Federal Trade Commission (FTC) also issued a factsheet for consumers concerning the at-home procedure.

Both statements strongly advise all consumers of DTC genetic tests to involve a medical professional, among other suggestions.

The U.S. Government Accountability Office performed a covert study of 15 DTC genetic tests and reported that the tests were "egregious examples of deceptive marketing, in addition to poor or non-existent advice from supposed consultation experts," according to a recent report in The Lancet.

Other organizations, such as the American Academy of Pediatrics, have also called for parents not to test their children for adult-onset diseases, as there is no substantial data proving the knowledge to reduce the rate of death or disease complications when intervention is commenced during childhood.

"Parents see more perceived benefits than may be true," said McBride. Another worry, said the researchers, is that a family may change its lifestyle—such as stop eating healthier foods or exercise less—if they discover that their child is at a decreased risk for an ailment like high blood pressure or heart disease.

"I thought it was an important study,” said Saul, “because it shows that we -- the medical genetics and pediatric communities -- have a lot of work ahead of us to impart information to parents to make sure genetic tests will be used appropriately and judiciously.”