ArticleJournal of autism and developmental disorders2013
Parents' perspectives on participating in genetic research in autism.
Article in Journal of autism and developmental disorders, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
24 citing papers in PubMed, 43 citations in OpenAlex.
- Randomized Study of Survey Recruitment Strategies for Parents of Autistic Children.Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & PractitionersTrial
- Does genetic testing impact stigma in autism: A scoping review.Journal of community genetics · 2026Review
- Delivered Right to Your Own Home: Community Perspectives on Home-Based Kits for Studying Genetic and Environmental Factors Related to Later Autism Diagnosis.Journal of autism and developmental disorders · 2025Article
- Impact of a Genetic Diagnosis for a Child's Autism on Parental Perceptions.Journal of autism and developmental disorders · 2025Article
- Attitudes of autistic adults toward genetic testing for autism.Journal of genetic counseling · 2025Article
- Impact of Receiving Genetic Diagnoses on Parents' Perceptions of Their Children with Autism and Intellectual Disability.Journal of autism and developmental disorders · 2025Article
- Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research.Journal of autism and developmental disorders · 2024Article
- Barriers, motivators and strategies to increase participation in genetic research among Asian and Black families of autistic individuals.Journal of community genetics · 2024Article
- Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers.Autism : the international journal of research and practice · 2024Article
- Parents' views of benefits and limitations of receiving genetic diagnoses for their offspring.Child: care, health and development · 2024Article
- Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?Paediatric and perinatal epidemiology · 2022Article
- Autism Spectrum Disorder and Genetic Testing: Parents' Attitudes-Data from Turkish Sample.Journal of autism and developmental disorders · 2021Article
- Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2020Article
- "It's being part of the big picture, even though you're a tiny jigsaw piece"-motivations and expectations of individuals participating in the Enroll-HD observational study.Journal of community genetics · 2020Article
- US Military Service Members' Reasons for Deciding to Participate in Health Research.Research in nursing & health · 2017Article
- "Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD.Journal of autism and developmental disorders · 2017Article
- Brief Report: Recruitment and Retention of Minority Children for Autism Research.Journal of autism and developmental disorders · 2016Article
- What Do Parents Think about Chromosomal Microarray Testing? A Qualitative Report from Parents of Children with Autism Spectrum Disorders.Autism research and treatment · 2016Article
- At the cross-roads of participatory research and biomarker discovery in autism: the need for empirical data.BMC medical ethics · 2015Review
- Parents' perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders.Journal of autism and developmental disorders · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Genetic research in autism depends on the willingness of individuals with autism to participate; thus, there is a duty to assess participants' needs in the research process. We report on families' motives and expectations related to their participation in autism genetic research. Respondents valued having a genetic result, as it alleviates guilt, promotes awareness, and may be used to tailor interventions and for family planning. The act of participating was distinctly significant, as it provided personal control, a connection to autism experts, networking with families, and hope for the future. The results of this study highlight complex factors involved in families' decisions to participate in autism genetic research and provide points to consider for this population of research participants.
Indexed as
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What Socratic holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.