Priorities for autism spectrum disorder risk communication and ethics

Abstract

Autism spectrum disorders are an issue of increasing public health significance. The incidence of autism spectrum disorders has been increasing in recent years, and they are associated with significant personal and financial impacts for affected persons and their families. In recent years, a large number of scientific studies have been undertaken, which investigate genetic and environmental risk factors for autism, with more studies underway. At present, much remains unknown regarding autism spectrum disorder risk factors, but the emerging picture of causation is in many cases complex, with multiple genes and gene-environment interactions being at play. The complexity and uncertainty surrounding autism spectrum disorder risk factors raise a number of questions regarding the ethical considerations that should be taken into account when undertaking autism spectrum disorder risk communication. At present, however, little has been written regarding autism spectrum disorder risk communication and ethics. This article summarizes the findings of a recent conference investigating ethical considerations and policy recommendations in autism spectrum disorder risk communication, which to the authors' knowledge is the first of its kind. Here, the authors discuss a number of issues, including uncertainty; comprehension; inadvertent harm; justice; and the appropriate roles of clinicians, scientists, and the media in autism spectrum disorder risk communication.

Parents’ Perceptions of the Usefulness of Chromosomal Microarray Analysis for Children with Autism Spectrum Disorders

“…Additionally, for parents of children with ASD, the discovery of a genetic variant may be accompanied by the realization that one of the parents has features consistent with ASD or broad autism phenotype (BAP) (Sasson et al 2013), that were previously unrecognized as such. Testing has some known risks and limitations including the fact that a negative result does not exclude a genetic etiology; incidental findings unrelated to the reason for testing may be found; and results of uncertain significance may be associated with prolonged uncertainty for the family (Burke et al 2010; Fanos 2012; McMahon et al 2006; Scherer and Dawson 2011; Yudell et al 2013). The potential repercussions of genomic testing for ASD should be considered and discussed in pre- and post-test counseling.…”

Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study

“…While it is true that basic or laboratory-based scientists might be less likely to interact with, and thus engage, the autism community, or to perceive benefits from such engagement, this distance should not be a rationale for limiting engagement. Many aspects of genetic and biomarker research – the hallmarks of translational research – conducted in basic science laboratories carry complex social and ethical implications related to “risk” (of developing autism) and cure and prevention [25] , [47] . These very issues are the ones that often provoke the most unease within the autism community and extra efforts must be taken to ensure that autistic people and their families are involved, not excluded, from basic science research [26] .…”

Genetic testing and corresponding services among individuals with autism spectrum disorder (ASD)

“…This discrepancy is not altogether surprising in that individuals with ASD are seen by a multitude of professionals. The dilemma is that as genetic testing options increase, their use is likely to increase as well; these newer options are far more complicated and, as pointed out by Yudell and colleagues [Yudell et al, ; Rossi et al, ], could be poorly communicated and lead to misunderstanding of the role of genetics in ASD. A related issue that may impact use is the amount of uncertainly expressed by parents around the role of genetics professionals.…”