Parents' Concern About Their Own and Their Children's Genetic Disease Risk

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Abstract
Objective To evaluate the effect of the genetic risk information source (family history vs genetic test results) on parents' concern about their own and their children's genetic disease risk. Design Randomized trial using a Web-enabled survey. Setting Internet survey. Participants National sample of 1342 parents. Intervention Parents first received a vignette about their hypothetical genetic risk, randomized as either a family history assessment or genetic test results. Next, parents received a vignette about their youngest child's hypothetical genetic risk, similarly randomized. Main Outcome Measure Parents' concern about their own and their child's genetic disease risk. Results The response rate was 71.2%. Parents were more likely to be concerned about their own disease risk when the risk estimate came from a family history assessment vs a genetic test result (odds ratio, 1.96; 95% confidence interval, 1.44-2.68). In contrast, information source was not associated with parents' concern about their children's disease risk. Parents' level of concern about disease risk was identical for themselves and their children 73% of the time in the same scenario. When concern differed, parents almost always reported greater concern about disease risk for their children. Conclusions Positive family history of disease generated greater concern about parents' own risk of inherited disease than did genetic test results. This effect was not evident for parents' concern about their children's risk. As genetic tests emerge and become increasingly available, physicians must not overlook the effect of family history on an individual's concern about disease risk.

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