Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk

Division of Health Outcomes and Health Behaviors, Department of Oncology, Georgetown University Medical Center, 3300 Whitehaven St, NW, Suite 4100, Washington, DC 20007, USA.
PEDIATRICS (Impact Factor: 5.47). 05/2011; 127(5):e1288-95. DOI: 10.1542/peds.2010-0938
Source: PubMed


To describe parents' attitudes toward pediatric genetic testing for common, adult-onset health conditions and to identify factors underlying these attitudes.
Parents (n = 219) enrolled in a large, group-practice health plan were offered a "multiplex" genetic test for susceptibility to 8 common, adult-onset health conditions and completed an online survey assessing attitudes and beliefs about the risks and benefits of the test for their child, their willingness to consider having their child tested, and other psychosocial variables.
Parents viewed the benefits of pediatric testing to outweigh its risks (positive decisional balance) and were moderately interested in pediatric testing. Variables associated with positive decisional balance included greater interest in knowing about gene-health associations in their child, anticipation of less difficulty understanding their child's genetic health risks, and more positive emotional reactions to learning about their child's decreased health risks (adjusted R(2) = 0.33, P < .0001). Similarly, variables associated with greater parental willingness to test were being a mother (versus being a father), greater perceived risk of diseases in their child, greater interest in knowing about gene-health relationships in their child, anticipating less difficulty learning about their child's genetic health risks, anticipating more positive emotional reactions to learning about their child's decreased health risks, and positive decisional balance (adjusted R(2) = 0.57, P < .0001).
As genetic susceptibility testing for common, adult-onset health conditions proliferates, pediatricians should anticipate parents' interest in testing children and be prepared to facilitate informed decision making about such testing.

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    • "A few interventions trials (Peshkin, DeMarco, & Tercyak, 2010) have evaluated best practices for assisting minors to understand the implications of parents' predictive genetic test results and increase adaptive coping in response to this information (e.g., promoting beliefs and behaviors to optimally manage risk). Although parental attitudes toward genetic susceptibility testing of minors for cancer are generally favorable and minors are undergoing testing (Howard, Avard, & Borry, 2011; Taber et al., 2010), it is unknown whether such testing prompts preventive behaviors such as avoidance of sun exposure and tobacco use, as well as energy balance behaviors (e.g., weight control and physical activity). Thus, the arena of communication between parents and minor children presents a wide-open landscape for psychologist-led health behavior research. "
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    American Psychologist 02/2015; 70(2):91-104. DOI:10.1037/a0036568 · 6.87 Impact Factor
    • "While attitudes toward genetic testing among parents of children with CHD remain unknown, surveys of general public's attitudes about genetic testing conducted in the U.S. and abroad [Molster et al., 2009; Rose et al., 2005a; Rose et al., 2005b; Wang et al., 2001] have, in general, found favorable attitudes with some concern about insurance discrimination. Additionally, parents generally have a positive attitude towards and interest in genetic testing for childhood [Brunger et al., 2000; Patenaude et al., 1996] and adult onset conditions [Campbell and Ross, 2005; Tercyak et al., 2011]. "
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    ABSTRACT: Clinical genetic testing for specific isolated congenital heart defects (CHD) is becoming standard of care in pediatric cardiology practice. Both genetic knowledge and attitudes toward genetic testing are associated with an increased utilization of genetic testing, but these factors have not been evaluated in parents of children with CHD. We mailed a survey to measure the demographics, genetic knowledge, and attitudes towards genetic testing of parents of children with CHD who previously consented to participate in a separate research study of the genetic etiology of left ventricular outflow tract malformations (LVOT). Of the 378 eligible families, 190 (50%) returned surveys with both parents completing surveys in 97 (51%) families, resulting in 287 participants. Genetic knowledge was assessed on an adapted measure on which the mean percent correct was 73.8%. Educational attainment and household income were directly and significantly associated with genetic knowledge (P < 0.001). Attitudes about the health effects of genetic testing were favorable with at least 57% agreeing that genetic testing would be used for managing health care and finding cures for disease. Conversely, a minority of participants found it likely that genetic testing would be used for insurance (up to 39.9%), employment (15.8%), or racial/social discrimination (up to 11.2%). Parents of younger children were less likely to endorse employment or racial/social discrimination. Genetic knowledge was not correlated with specific attitudes. Among parents of children with CHD, genetic knowledge was directly associated with household income and education, but additional research is necessary to determine what factors influence attitudes towards genetic testing. © 2014 Wiley Periodicals, Inc.
    American Journal of Medical Genetics Part A 12/2014; 164(12). DOI:10.1002/ajmg.a.36763 · 2.16 Impact Factor
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    • "Similar to the result obtained by Keneth et al. in 2011, as quoted “parents viewed the benefits of pediatric testing to outweigh its risks (positive decisional balance) and were interested in pediatric testing,” [14] respondents in the study were of the opinion that children could undergo genomics tests but the result of such tests should not be disclosed to the children until maturity. The reason most commonly cited for non-disclosure of result to minors was because they were too young to comprehend and take decisions on the basis of the result. "
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    BMC Medical Ethics 04/2014; 15(1):34. DOI:10.1186/1472-6939-15-34 · 1.50 Impact Factor
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