Parents receptive to genetic testing for their children

Parents favor genetic tests for their children to predict susceptibility to common adult-onset diseases, according to results from an online survey. The findings appear online in Pediatrics.

Two hundred nineteen parents of children younger than 17 years consented to view Internet modules about a “multiplex” genetic susceptibility test, which tests for 15 polymorphisms associated with 8 common health conditions (colon, skin, and lung cancer; heart disease; osteoporosis; high blood pressure; high cholesterol; and type 2 diabetes), after which they were offered the test and invited to participate in a survey. The survey measured parents’ attitudes and beliefs about the risks and benefits of the test for their child and their willingness to have their child tested. (No children in the study were actually tested.)

Slightly more than half (51%) of the parents intended to undergo multiplex genetic testing. On a 1 to 7 scale, with 1 indicating no difficulty and 7 indicating very difficult, parents anticipated moderate difficulty in understanding their child’s genetic disease risk (mean score, 4.1).

On a 1 to 7 scale, with 1 indicating strongly disagree and 7 indicating strongly agree, parents considered the benefits to the child in participating in genetic screening to outweigh the risks (mean score, 5.0).

The researchers found that 7 variables were associated with a greater willingness for parents to have their child undergo genetic testing: Being the child’s mother; perceiving the child to have greater disease risk; valuing knowing about gene-health links; being less conflicted in learning about genetic health information; anticipating positive emotional reactions when learning that the child has decreased health risks; intending to undergo genetic testing themselves; and perceiving that the benefits of genetic testing outweigh the risks.

In general, parents believed that the benefits of genetic testing outweighed the risks, but in their report, the researchers suggest that parents may not anticipate their full range of emotional reactions when learning the results of the tests. They note that parents may benefit from discussion with the child’s pediatrician about the potential downsides of testing to help them make more informed choices. These downsides include whether test results yield meaningful information, how this information would be acted on, and actions to protect a child’s health independent of genetic risk.

The researchers emphasize that the actual risks, benefits, and usefulness of genetic testing for common preventable diseases have not been established.

Tercyak KP, Alford SH, Emmons KM, Lipkus IM, Wilfond BS, McBride CM. Parents’ attitudes toward genetic testing for common disease risk. Pediatrics. 2011. Epub ahead of print.