Researchers look at direct-to-consumer genetic testing

Nov 4 2008

What's your child's "genetic destiny?" Does diabetes run in your family? Or has a genetic test indicated that your child may some day be at risk for developing heart disease?

In the current era of direct-to-consumer genetic testing, many fear that individuals will put too much faith in a genetic test result. But a new study from the University of Michigan C.S. Mott Children's Hospital indicates that information from family history and genetic testing caused equal concern among parents about their children's risk of disease.

"We were surprised to find that parents were not overly concerned about a child's genetic test result compared to a child's genetic risk that comes from family history" says study lead author Beth A. Tarini, M.D., an assistant professor of pediatrics and a member of the Child Health Evaluation and Research (CHEAR) Unit in the Division of General Pediatrics at Mott. "Our findings suggest that even as genetic tests become more accessible, family history will likely remain a meaningful part of a child's health evaluation and our discussions with parents."

In contrast, when asked about themselves, parents were more likely to be worried when family history - not genetic testing - indicated that there may be a chance for developing a disease.

"Parents interpreted risk differently for themselves than for their children. For parents, family history - in effect, one's observed genetic destiny - trumped disease risk as measured by genetic tests," notes Tarini.

The study - set to appear in the November issue of Archives of Pediatric & Adolescent Medicine - asked parents to separately assess their level of concern for their own as well as their children's genetic disease risk based on family history and genetic testing.

Direct-to-consumer genetic testing is making it easier than ever for families to get genetic test results and studies have shown that individuals' perceptions of genetic disease risk have been shown to influence their health care decisions. Therefore, Tarini and her colleagues felt it was important to learn more about whether parents are more concerned about their child's genetic risk when it comes from a genetic test result.

In all, the source of the risk information - family history or genetic test results - did not affect parents' concern about their children's disease risk. Tarini says these results reinforce the importance of using family history, not just genetic testing, to assess disease risk.

Methodology: The study used data from a national online survey conducted in collaboration with Knowledge Networks, Inc. The survey was administered to a random sample of 2,857 adults, ages 18 and older, who are a part of Knowledge Network's online KnowledgePanel®. The sample was subsequently weighted to reflect U.S. population figures from the U.S. Census Bureau. About three-fourths of the sample were parents. As part of the online survey, parents received vignettes about their own and their youngest child's genetic risk, randomized as either a family history assessment or genetic test results.

Funding: The research was supported by the U-M Clinical Science Scholars Program.

Authors: Along with Tarini, co-authors from the Division of General Pediatrics at U-M C.S. Mott Children's Hospital were Dianne Singer, M.S.; Sarah J. Clark, M.P.H.; and Matthew M. Davis, M.D., M.A.P.P.

Citation: Archives of Pediatric & Adolescent Medicine , Vol. 162, No. 11.