Parents’ attitudes toward genetic research in autism spectrum disorder

Johannessen, J. S.; Nærland, Terje; Bloss, Cinnamon S.; Rietschel, Marcella; Strohmaier, Jana; Gjevik, Elen; Heiberg, Arvid; Djurovic, Srdjan; Andreassen, Ole A.

doi:10.1097/ypg.0000000000000121

Cited by 16 publications

(17 citation statements)

References 11 publications

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“…The fourth section asked about attitudes toward genetic research and CGT. The questions about attitudes toward genetic research have been previously reported [36]. …”

Section: Methodsmentioning

confidence: 99%

“…Parental stress or psychological well-being is not significantly different in parents of children across the ASD sub-diagnoses of infantile autism and Asperger syndrome [35]. However, we previously found very small significant differences in attitudes toward genetic research between parents of children with autism and parents of children with Asperger syndrome [36]. …”

Section: Introductionmentioning

confidence: 99%

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

Johannessen

Nærland

Hope

et al. 2017

IJMS

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Clinical genetic testing (CGT) of children with autism spectrum disorder (ASD) may have positive and negative effects. Knowledge about parents’ attitudes is needed to ensure good involvement of caregivers, which is crucial for accurate diagnosis and effective clinical management. This study aimed to assess parents’ attitudes toward CGT for ASD. Parent members of the Norwegian Autism Society were given a previously untested questionnaire and 1455 answered. Linear regression analyses were conducted to evaluate contribution of parent and child characteristics to attitude statements. Provided it could contribute to a casual explanation of their child’s ASD, 76% would undergo CGT. If it would improve the possibilities for early interventions, 74% were positive to CGT. Between 49–67% agreed that CGT could have a negative impact on health insurance, increase their concern for the child’s future and cause family conflicts. Parents against CGT (9%) were less optimistic regarding positive effects, but not more concerned with negative impacts. The severity of the children’s ASD diagnosis had a weak positive association with parent’s positive attitudes to CGT (p-values range from <0.001 to 0.975). Parents prefer that CGT is offered to those having a child with ASD (65%), when the child’s development deviates from normal (48%), or before pregnancy (36%). A majority of the parents of children with ASD are positive to CGT due to possibilities for an etiological explanation.

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“…The fourth section asked about attitudes toward genetic research and CGT. The questions about attitudes toward genetic research have been previously reported [36]. …”

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Johannessen

Nærland

Hope

et al. 2017

IJMS

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“…Despite significant support from the autistic community for these large-scale genetic research efforts [ 31 ], to date there has not been any attempt to create such a resource in the Australian context. Australia comprises a similar range of socio-demographic variables relative to other international ASD biobanks, but with a unique cultural and ethnic diversity.…”

Section: Introductionmentioning

confidence: 99%

Study protocol for the Australian autism biobank: an international resource to advance autism discovery research

et al. 2018

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BackgroundThe phenotypic and genetic heterogeneity of autism spectrum disorder (ASD) presents considerable challenges in understanding etiological pathways, selecting effective therapies, providing genetic counselling, and predicting clinical outcomes. With advances in genetic and biological research alongside rapid-pace technological innovations, there is an increasing imperative to access large, representative, and diverse cohorts to advance knowledge of ASD. To date, there has not been any single collective effort towards a similar resource in Australia, which has its own unique ethnic and cultural diversity. The Australian Autism Biobank was initiated by the Cooperative Research Centre for Living with Autism (Autism CRC) to establish a large-scale repository of biological samples and detailed clinical information about children diagnosed with ASD to facilitate future discovery research.MethodsThe primary group of participants were children with a confirmed diagnosis of ASD, aged between 2 and 17 years, recruited through four sites in Australia. No exclusion criteria regarding language level, cognitive ability, or comorbid conditions were applied to ensure a representative cohort was recruited. Both biological parents and siblings were invited to participate, along with children without a diagnosis of ASD, and children who had been queried for an ASD diagnosis but did not meet diagnostic criteria. All children completed cognitive assessments, with probands and parents completing additional assessments measuring ASD symptomatology. Parents completed questionnaires about their child’s medical history and early development. Physical measurements and biological samples (blood, stool, urine, and hair) were collected from children, and physical measurements and blood samples were collected from parents. Samples were sent to a central processing site and placed into long-term storage.DiscussionThe establishment of this biobank is a valuable international resource incorporating detailed clinical and biological information that will help accelerate the pace of ASD discovery research. Recruitment into this study has also supported the feasibility of large-scale biological sample collection in children diagnosed with ASD with comprehensive phenotyping across a wide range of ages, intellectual abilities, and levels of adaptive functioning. This biological and clinical resource will be open to data access requests from national and international researchers to support future discovery research that will benefit the autistic community.

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“…Regarding this outcome of testing, decision by parents to have a biological offspring undergo CMA may represent a form of participation in autism genetic research. Parent perceptions toward using their ASD-affected child's information in genetic research have been previously been found to be overall positive [26]. Due to this information being passed on for study within a genomic resource for the use of researchers, electing to participate in research using CMA results can be considered an altruistic motivation.…”

Section: Doi: 107243/2054-992x-4-4mentioning

confidence: 99%

“…Due to this information being passed on for study within a genomic resource for the use of researchers, electing to participate in research using CMA results can be considered an altruistic motivation. Throughout studies of autism genetic research, altruism is found as a consistent motivator [20,26,27]. For the Simon's Simplex Collection, it was discovered that at least two-thirds of parents participated to altruistically contribute to autism research [27].…”

Section: Doi: 107243/2054-992x-4-4mentioning

confidence: 99%

Can genetic research motivate parents to pursue genomic testing for children with autism spectrum disorder?

Floyd¹,

Liu²

2017

J Autism

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Advanced genomic tests such as Chromosomal Microarray Analysis (CMA) have been clinically offered to children with Autism Spectrum Disorder(ASD). However, the actual utilization of these tests is low among parents of children with ASD. The aim of this study is to examine the association between parental perceptions regarding autism research and their intention to take their children to undergo recommended genomic tests. We conducted a web-based survey using a community strategy in Eastern North Carolina among parents of children with ASD. Our final sample constituted 204 parents. The majority were mothers, married and Caucasian. Parents' test intention was high among this sample, and those desiring to help and expressing favorable perceptions toward ASD genetic research were more likely to test. Our findings suggest a link between parental attitudes towards genetic research and their decision to test a child with ASD. This study can influence patient education approaches of health professionals in counseling parental genetic testing decision, as well as informing policy creation about access and outreach for parents toward ASD research.

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Parents’ attitudes toward genetic research in autism spectrum disorder

Abstract: Parents of children with ASD have, in general, a very positive attitude toward genetic research. Data confidentiality is important, and they express a need for information on the purpose and progress of the research.

Cited by 16 publications

References 11 publications

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

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

Study protocol for the Australian autism biobank: an international resource to advance autism discovery research

Can genetic research motivate parents to pursue genomic testing for children with autism spectrum disorder?

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