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Interagency Autism Coordinating Committee (IACC)
Autism Research Database
Office of Autism Research Coordination (OARC)
 
Project Element Element Description

Project Title

Project Title

CMA Genetic Testing: An Intervention for Parents of Children with Autism

Principal Investigator

Principal Investigator

Xu, Lei

Description

Description

Chromosomal microarray analysis (CMA) is a robust technology officially recommended for children with autism spectrum disorders (ASDs). However, CMA genetic testing might raise ethical, legal and social issues such as stigmatization, health insurance concerns and test misconceptions. Therefore, it is essential to understand what might motivate or inhibit test decisions among parents of children with ASD. Lei Xu and her colleagues at East Carolina University are conducting the first community-based, theory-driven project to assess the genetic literacy, educational needs and decision-making processes regarding CMA genetic testing among parents of children with ASD in eastern North Carolina. Xu and her team have already conducted individual, face-to-face interviews with 45 parents and found that none of the parents had heard of CMA genetic testing or had met with a genetic counselor or other healthcare provider about CMA. The majority of parents (65 percent) reported that they would like to have their children tested if this test is offered to them. However, parents raised many concerns about the test, including cost, test procedure, stigmatization and transportation. These findings highlight the need for culturally appropriate educational interventions targeted at increasing knowledge of, and accessibility to, CMA testing among parents of children with ASD. Xu’s team aims to extend this work with a larger-scale survey coupled with an educational intervention program. The team plans to: 1) examine parental genetic literacy, educational needs and decision-making regarding CMA genetic testing using an online survey, and 2) use this information to inform the development and evaluation of a Web-based educational intervention for parents of children with ASD. Completion of this proposed project will provide useful insights into genetic literacy and medical practice, as well as the potential for intervention that could improve the diagnosis and treatment of ASD.

Funder

Funder

Simons Foundation

Fiscal Year Funding

Fiscal Year Funding

60000

Current Award Period

Current Award Period

2015-2016

Strategic Plan Question

Strategic Plan Question

Question 1: When Should I Be Concerned?

Strategic Plan Objective

Strategic Plan Objective

Yellow dot: Objective has some degree of funding, but less than the recommended amount. 1SD. Conduct at least two studies to understand the impact of early diagnosis on choice of intervention and outcomes by 2015. IACC Recommended Budget: $6,000,000 over 5 years.

Project Link

Project Link

CMA Genetic Testing: An Intervention for Parents of Children with Autism (External web link)

Institution

Institution

East Carolina University

State/Country

State/Country

North Carolina

Project Number

Project Number

369023

Federal or Private?

Federal or Private?

Private

Received ARRA Funding?

Received ARRA Funding?

No

History/Related Projects

History/Related Projects

N/A

 
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