ANN ARBOR, Mich.—The latest results from the C.S. Mott Children’s Hospital National Poll on Children’s Health show more than half of parents are interested in having their children checked for disease risks using at-home personal genetic testing kits.
In May 2010, the poll asked 1,461 adults, ages 18 and older with children ages 0-17, about their interest in getting personal genetic testing for their children and reasons why they would be interested in getting testing for their children.
The poll found that 53 percent of parents are either very or somewhat interested in personal genetic testing for their children. Of those parents, 96 percent think it may give them the chance to prevent diseases and may help parents recognize children’s health problems earlier. The poll also shows that 90 percent of parents who express interest in genetic testing for their children are also interested in genetic testing for themselves.
The United States Food and Drug Administration recently questioned whether such personal genetic tests should be regulated, to ensure the public gets reliable and useful health information from them.
“While not widely advertised, personal genetic testing may be ordered by parents on behalf of their children,” says Beth Tarini, M.D., M.S., assistant professor in the Department of Pediatrics and Communicable Diseases at the University of Michigan Medical School. “Personal genetic testing of children creates medical, ethical and legal challenges that go beyond the current discussion about the regulation of these tests.”
People interested in knowing their genetic risk for developing different diseases such as heart disease, cancer and diabetes can order genetic testing kits online and have test results sent to them even without a prescription from a health care provider. But the poll also shows that 47 percent of parents are not interested in having their children genetically tested for diseases, for a variety of reasons.
“We found that eighty-seven percent of parents who are not interested in genetic testing for children think it may make them worry too much about their children’s future and whether or not their children will develop disease,” Tarini says.
Two-thirds of uninterested parents also agree that genetic testing may lead to discrimination against children because of the genetic risk of disease.
“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,” Tarini says. “Advocates argue that personal genetic testing may motivate parents and children to take preventive actions, while critics believe personal genetic tests may provide inaccurate or incomplete information that may worry parents and children more than it helps them.”
Matthew Davis, M.D., M.A.P.P., director of the C.S. Mott Children’s Hospital National Poll on Children’s Health, adds, “With exciting new medical technologies such as personal genetic testing, 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.”
Survey questions: http://www.med.umich.edu/mott/npch/pdf/071910questions.pdf
Data Source: This report presents findings from a nationally representative household survey conducted exclusively by Knowledge Networks, Inc, for C.S. Mott Children’s Hospital via a method used in many published studies. The survey was administered May 1-18, 2010, to a randomly selected, stratified group of parents aged 18 and older (n= 1,461) with children 0-17 years of age from the Knowledge Networks standing panel that closely resembles the U.S. population. The sample was subsequently weighted to reflect population figures from the U.S. Census Bureau. The survey completion rate was 56 percent among parent panel members contacted to participate. The margin of error is plus or minus 2 to 5 percentage points.
To learn more about Knowledge Networks, visit www.knowledgenetworks.com.
Purpose/Funding: The C.S. Mott Children’s Hospital National Poll on Children’s Health – based at the Child Health Evaluation and Research (CHEAR) Unit at the University of Michigan and funded by the Department of Pediatrics and Communicable Diseases and the University of Michigan Health System – is designed to measure major health care issues and trends for U.S. children. Research findings from the C.S. Mott Children’s Hospital National Poll on Children’s Health do not represent the opinions of the investigators or the opinions of the University of Michigan. The University of Michigan reserves all rights over this material.
Media contact: Jessica Soulliere