Autism Spectrum Disorders, Risk Communication, and the Problem of Inadvertent Harm

Abstract

Autism spectrum disorders (ASDs) are an issue of significant and growing importance to the field of public health. The prevalence of ASDs is rising, and these disorders significantly impact the quality of life of affected persons and their families. Though the etiology of ASDs has long been poorly understood, in recent years, studies are revealing genetic and environmental risk information about ASDs, with much more risk information expected to follow from scientific studies currently underway. The availability of this risk information raises questions about whether and how it should be communicated to individuals, families, and the public at large. One ethical issue of particular concern with ASD risk communication is the possibility that it may cause inadvertent harm to risk message recipients. Here we review the emerging picture of ASD risk, discuss some ways in which it may lead to inadvertent harm, and suggest some future directions for risk communication research and practice that might help to address this issue.

The ethics of complexity. Genetics and autism, a literature review

“…Some authors state that as autism is a multifactorial condition, and that genes merely convey susceptibility, such tests may yield many false positives or negatives and as such may have limited clinical validity [McMahon et al, 2006;Marchant and Robert, 2008;Jordan and Tsai, 2010;Rossi et al, 2013]. Authors also ask whether some children that were tested positive for genetic susceptibility, but that will never develop the condition be unnecessary stigmatized [Marchant and Robert, 2008;Jordan and Tsai, 2010;Rossi et al, 2013]. Several papers state that a positive test can influence the parent-child interaction and lead to anxiety and worry .…”

“…Reproducers may use this information to forgo reproduction or to prevent the birth of a or another child with autism by prenatal diagnosis or preimplantation genetic diagnosis (PGD) [McMahon et al, 2006;Amor and Cameron, 2008;Marchant and Robert, 2008;Walsh, 2010;Pellicano and Stears, 2011;Daley et al, 2013;Gershon and Alliey-Rodriguez, 2013;Jaarsma and Welin, 2013;Rossi et al, 2013]. PGD can be performed on the basis of a specific genetic mutation or on the basis of sex selection, as the condition is four times more frequent in boys [Amor and Cameron, 2008].…”

Uncovering the Etiology of Autism Spectrum Disorders: Genomics, Bioinformatics, Environment, Data Collection and Exploration, and Future Possibilities

“…Dr. Newshaffer is an epidemiologist and his currently involved in large risk factor epidemiology studies, autism phenotyping studies, genomic and epigenomic research, and studies focused on the utilization and evaluation of health care and behavioral intervention services 1,[27][28][29] . He will discuss a number of issues including the uncertainty, comprehension, inadvertent harm, as well as appropriate roles of clinicians, scientists, and the media, in ASD communication.…”

“…This can include abnormalities in language, reciprocal social interactions, and/or other communication skills as well as repetitive behaviors 1 . Autism spectrum disorders are divided into three basic categories: autistic disorder (frequently referred to as autism), Asperger syndrome, and pervasive developmental disorder (PDD-NOS) 1 . These disorders, as of 2008, affect 1 in 88 children, and are more prevalent in males than females 2 .…”

“…These disorders, as of 2008, affect 1 in 88 children, and are more prevalent in males than females 2 . The prevalence estimates of ASD have increased, above increases due to changes in diagnostic criteria 1,3 . In addition, children with ASD often have intellectual disability, estimated as high as 68% of ASD cases 4 , and approximately 75% have lifelong disability requiring social/educational support 5 .…”