Parents’ Attitudes toward Clinical Genetic Testing for Autism Spectrum Disorder—Data from a Norwegian Sample

Johannessen, J. S.; Nærland, Terje; Hope, Sigrun; Torske, Tonje; Høyland, Anne Lise; Strohmaier, Jana; Heiberg, Arvid; Rietschel, Marcella; Djurovic, Srdjan; Andreassen, Ole A.

doi:10.3390/ijms18051078

Cited by 37 publications

(45 citation statements)

References 60 publications

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“…This finding was recently corroborated in a large Norwegian study where 76% of parents would undergo genetic testing if they felt that it could provide a causal explanation for their child’s autism. 38 The other deciding factor for testing was physician recommendation. Based on the qualitative answers provided, it was obvious that some of the reasons parents pursued genetic testing were unrelated to ASD, such as seizures, father dying of cancer, and failure to thrive (Table 6).…”

Section: Discussionmentioning

confidence: 99%

Parental Perception and Participation in Genetic Testing Among Children With Autism Spectrum Disorders

Harrington

Emuren

Restaino

et al. 2018

Clin Pediatr (Phila)

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The purpose of this study was to determine the factors associated with genetic testing in children with autism spectrum disorders (ASDs) and understand parental involvement in the decision to test using survey data of parents of children with ASD. Evaluation by a geneticist was associated with genetic testing by more than 39 times compared to evaluation by a nongeneticist (95% CI = 9.15-168.81). Those offered testing by the physicians were more than 6 times more likely to be tested than those not offered testing (95% CI = 1.66-24.61). Financial concerns, not being offered testing, and lack of awareness were the most consistent reasons for not testing given by participants. A physician’s recommendation for testing and an evaluation by a geneticist were the most important factors associated with genetic testing in children with ASD. Educating primary care physicians and nongenetic specialists can potentially improve genetic testing among children with ASD.

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Section: Discussionmentioning

confidence: 99%

Parental Perception and Participation in Genetic Testing Among Children With Autism Spectrum Disorders

Harrington

Emuren

Restaino

et al. 2018

Clin Pediatr (Phila)

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“…It may also lead to experiences of shame and guilt [66]. Genetic research on NDD may stigmatize not only persons who are affected [67], but also their relatives who are not themselves affected by a disorder: "[p]arents are also in danger of being blamed for their children's condition when the condition is inherited" [68]. Higher risk of stigmatization may be faced in low-and middle-income countries where less support and fewer services may be available to patients and family members [25].…”

Section: Sharing Of Research Resultsmentioning

confidence: 99%

Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

et al. 2021

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Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper.

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“…The findings from this study presented an association between CDH13 variations and ADHD. Autism spectrum disorder is a neurological disorder with high heritability, and approximately 18 in 10,000 children are affected in Saudi Arabia (Alnemary et al, 2017;Johannessen et al, 2017). Currently, the main causative genetic mutations of ASD still seem to be unrecognized, and more advanced studies are strongly needed to fully understand the causes of ASD.…”

Section: Discussionmentioning

confidence: 99%

The Co-existence of ADHD With Autism in Saudi Children: An Analysis Using Next-Generation DNA Sequencing

et al. 2020

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Attention-deficit/hyperactivity disorder (ADHD) is one of the most common neurodevelopmental disorders. Several studies have confirmed the co-existence of other neuropsychiatric disorders with ADHD. Out of 106 individuals suspected to have ADHD, eight Saudi Arabian pediatric patients were diagnosed with ADHD using a dual assessment procedure based on highly significant scores from the international criteria for diagnosis; (full form DMS) DSM-5. Then, these patients were examined for the co-existence of autism and ADHD using different international diagnostic protocols. Four patients with combined ADHD and autism and four ADHD patients without autism were examined for the presence of genetic variants. Six variants (chr1:98165091, chr6:32029183, chr6:32035603, chr6:32064098, chr8:2909992, chr16:84213434) were identified in 75% of the patients with ADHD and autism, indicating that these genes may have a possible role in causing autism. Five variants (The chr2:116525960, chr15:68624396, chr15:91452595, chr15:92647645, and chr16:82673047) may increase to the severity of ADHD. This study recommends screening these eleven variants in ADHD cases and their relevant controls to confirm the prevalence in the Saudi population. It is recommended that future studies examine the 11 variants in detail.

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Parents’ Attitudes toward Clinical Genetic Testing for Autism Spectrum Disorder—Data from a Norwegian Sample

Cited by 37 publications

References 60 publications

Parental Perception and Participation in Genetic Testing Among Children With Autism Spectrum Disorders

Parental Perception and Participation in Genetic Testing Among Children With Autism Spectrum Disorders

Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

The Co-existence of ADHD With Autism in Saudi Children: An Analysis Using Next-Generation DNA Sequencing

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