Medical Professional Publications

Knowledge and Attitudes about Genetic Testing Held by Parents of Children with Congenital Heart Defects

(From the January 2015 Issue of Research Now)

Although there are few studies of parental knowledge about genetics and parental attitudes toward genetic testing, previous research has demonstrated that both of these factors are associated with an increased utilization of genetic testing. In a recent publication in the American Journal of Medical Genetics, researchers at Nationwide Children’s Hospital examined whether genetic knowledge was associated with attitudes about genetic testing for parents of children with congenital heart defects (CHD), since genetic testing for CHD is gradually becoming standard of care in inpatient and outpatient settings in pediatric cardiology.

“Previously, we completed a survey study of parents of children with idiopathic hypertrophic cardiomyopathy, or HCM,” says Sara Fitzgerald-Butt, MS, LGC, genetic counselor in the Center for Cardiovascular and Pulmonary Research in The Research Institute and The Heart Center at Nationwide Children’s and lead author of the recent publication. “We were surprised that although most of these parents knew their child’s HCM was genetic, very few knew that genetic testing was available for their child.”

For this reason, Fitzgerald-Butt and her colleagues at Nationwide Children’s were interested in measuring genetic knowledge and attitudes about genetic testing. They examined this in a sample of parents of children with heart defects, for which other causes have been ruled out and which have a genetic component. The data in this study was part of a larger study that Fitzgerald-Butt and her team conducted by at Nationwide Children’s to determine parents’ understanding of the informed consent process.

“Using the data we collected from the parents who had previously participated in a study to discover the genetic causes of heart defects, we measured knowledge and attitudes and then determined what demographic factors were associated with each of these,” says Kim McBride, MD, MS, senior author of the study and principal investigator in the Center for Cardiovascular and Pulmonary Research. “We then tested whether there was an association between genetic knowledge and attitudes.”

Of the 378 families who were eligible, at least one parent responded in 190 families, resulting in the receipt and analysis of survey data from a total of 287 participants. Using items from the Centers for Disease Control and Prevention’s 2009 Behavioral Risk Factor Surveillance System (BRFSS) questionnaire, researchers examined demographics such as parent age, gender, race/ethnicity, education, marital status, household income and current employment. Parental knowledge of genetics was assessed with an 18-item true/false instrument. Lastly, parental attitudes towards genetic testing were evaluated with a 12-item scale that measured individuals’ beliefs about how results from genetic tests affected three domains: health, insurance/employment discrimination and racial/social discrimination.

The research team found that genetic knowledge was generally high, at an average score of 74 percent correct responses on the true/false test. High knowledge was associated with having more years of education and higher household income, but attitudes about the health effects of genetic testing were not as predictable based on demographics or genetics knowledge. In addition, the survey analysis indicated that the age of the child — but not the age of the parent — was associated with certain parental attitudes about genetic testing.

“What our study demonstrated is that no assumptions should be made about an individual’s attitude toward genetics, by clinicians or clinical researchers, despite the individual fitting the characteristics of someone likely to have high genetics knowledge,” explains Fitzgerald-Butt. “The opposite is also true: no attitude assumptions should be made for those likely to have low genetics knowledge.”

Researchers at Nationwide Children’s plan on conducting further studies of the genetics knowledge instrument’s validity and reliability, since a validated, written measure of genetic knowledge is not currently available. Once this is done, Fitzgerald-Butt hopes that researchers and clinicians will adopt the approach for additional avenues of genetics-related research and clinical care with this and similar populations.

Full Citation:

Fitzgerald-Butt SM, Klima J, Kelleher K, Chisolm D, McBride KL. Genetic knowledge and attitudes of parents of children with congenital heart defects. American Journal of Medical Genetics Part A. 2014, 164A:3069-3075.

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