Abstract
Examining community views on genetic/epigenetic research allows collaborative technology development. Parent perspectives toward genetic/epigenetic testing for autism spectrum disorder (ASD) are not well-studied. Parents of children with ASD (n = 131), non-ASD developmental delay (n = 39), and typical development (n = 74) completed surveys assessing genetic/epigenetic knowledge, genetic/epigenetic concerns, motives for research participation, and attitudes/preferences toward ASD testing. Most parents (96%) were interested in saliva-based molecular testing for ASD. Some had concerns about privacy (14%) and insurance-status (10%). None (0%) doubted scientific evidence behind genetic/epigenetic testing. Most reported familiarity with genetics (88%), but few understood differences from epigenetics (19%). Child developmental status impacted insurance concerns (p = 0.01). There is broad parent interest in a genetic/epigenetic test for ASD. It will be crucial to carefully consider and address bioethical issues surrounding this sensitive topic while developing such technology.
Highlights
Autism spectrum disorder (ASD) encompasses a set of heterogeneous conditions, characterized by atypical development in social communication and interaction, as well as restricted and repetitive patterns of behaviors and interests (Lai et al 2014)
This study was approved by the Institutional Review Boards (IRB) at the State University of New York (SUNY) Upstate Medical University and the Penn State College of Medicine
We examined the impact of parent age, race, gender, education level, child diagnosis, previous knowledge of genetics/epigenetics and source of information about genetics/epigenetics on the response items
Summary
Autism spectrum disorder (ASD) encompasses a set of heterogeneous conditions, characterized by atypical development in social communication and interaction, as well as restricted and repetitive patterns of behaviors and interests (Lai et al 2014). Interviews, and focus groups reveal several lingering concerns, such as (1) who will have access to genetic test information, especially when the information is in electronic medical records (Beskow and Dean 2008; Hull et al 2008; KettisLindblad et al 2006; McGuire et al 2008; Trinidad et al 2010), (2) will genetic research data be shared with outside investigators (Abraham et al 2014; Kaufman et al 2009; Ludman et al 2010; Rahm et al 2013), and (3) will individuals have access to their own genetic research data (Godard et al 2007; Haga and Zhao 2013; Ormond et al 2009) These studies suggest that privacy and confidentiality are important in the context of discrimination by insurers and employers who may have access to genetic information (Wong et al 2004). Based on previous studies examining motives for participation in genetic/epigenetic research, we hypothesized that a desire to help children would be the strongest driver of participation, and that parents would generally desire return of full epigenetic results, regardless of baseline knowledge of epigenetics or the implications of the results on child health. We posited that child developmental status (ASD, typical development, or non-ASD developmental delay) might impact parental views
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