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Parents Like Home Genetic Testing for Children


If you are a parent, would you like to know if your child is at risk for certain diseases? Would you like to be able to test your child yourself, using a home genetic testing kit? According to a new survey, more than half of parents say they would like to do such testing.

The C.S. Mott Children’s Hospital National Poll on Children’s Health found that 53 percent of parents surveyed said they were either very or somewhat interested in home genetic testing for their children. The May 2010 poll questioned 1,461 adults who had children ages 0 to 17 about their interest in home genetic testing and why they would be interested in such testing.

How Home Genetic Testing Works
The National Institutes of Health provides information on home genetic testing kits. Traditionally, genetic tests have been available only through healthcare providers, who ordered the appropriate test from a lab, collected and handled the samples, and then interpreted the results. Now home genetic testing, also referred to as direct-to-consumer genetic testing, allows consumers access to a person’s genetic information without the need to involve doctors or insurance companies.

Currently, consumers can purchase a genetic test through the mail or local drug stores. Once received, the test involves collecting a DNA sample, usually by swabbing the inside of the cheek, and sending the sample back to the laboratory. In some cases, individuals must have a blood sample drawn from a health clinic. Consumers can receive their results either by mail, by telephone, or online. Genetic counseling or assistance from other healthcare providers is also available in some cases. The cost for home genetic testing can range from several hundred dollars to more than one thousand dollars.

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Survey Results
Of the 53 percent of parents who expressed an interest in personal genetic testing for their children, 96 percent believe it gives them an opportunity to prevent diseases and to identify their children’s health problems earlier. Ninety percent of parents also said they would be interested in genetic testing for themselves.

At the same time, 87 percent of parents who were not interested in genetic testing for their children said it would cause them to “worry too much about their children’s future and whether or not their children will develop disease,” according to Beth Tarini, MD, MS, assistant professor in the Department of Pediatrics and Communicable Diseases at the University of Michigan Medical School. Among parents not interested in testing their children, two-thirds were concerned that such testing might result in discrimination against the children if they showed a genetic risk for certain diseases.

The Food and Drug Administration (FDA) has questioned whether these home genetic test kits should be regulated to ensure consumers get reliable, useful information. Tarini points out, however, that “personal genetic testing of children creates medical, ethical and legal challenges that go beyond the current discussion about the regulation of these tests.”

“It’s important for parents to understand that we have little data about the benefits and harms associated with the use of this testing in children,” warns Tarini. This new poll provides information on what parents think about home genetic testing, which is essential. Matthew Davis, MD, MAPP, director of the C.S. Mott Children’s Hospital National Poll on Children’s Health, notes that “it’s extremely important to know what the public thinks. That’s especially true for tests that can be used for children, because the time frame and consequences of testing may be less clear, early on in the lifespan of a new technology.”

The National Institutes of Health points out that genetic testing provides only one bit of information about an individual’s health. Other genetic issues, environmental factors, lifestyle choices, and family medical history also play a role in a person’s risk of developing disease. More research is necessary to fully understand the benefits and limitations of home genetic testing for children and adults as well.

National Institutes of Health
University of Michigan Health System