ArticleJournal of empirical research on human research ethics : JERHRE2011
Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.
Article in Journal of empirical research on human research ethics : JERHRE, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis that pooled it.
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
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Systematic Review: The Psychosocial Impacts of Autism-Related Genetic Testing.Journal of the American Academy of Child and Adolescent Psychiatry · 2026Pooled it
- Aligning Biomedical Research With Neurodiversity to Support the Metabolic Health of Autistic Individuals.Obesity science & practice · 2026Article
- Ambiguities faced by parents who received a genetic diagnosis for autistic offspring with intellectual disabilities.Journal of community genetics · 2025Article
- Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers.Autism : the international journal of research and practice · 2024Article
- Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study.European journal of human genetics : EJHG · 2024Article
- Receiving de novo genetic diagnoses for autism with intellectual disability: parents' views of impacts on families' reproductive decisions.Journal of community genetics · 2024Article
- Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study.European journal of human genetics : EJHG · 2023Article
- Genotype first: Clinical genomics research through a reverse phenotyping approach.American journal of human genetics · 2023Review
- Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review.European journal of human genetics : EJHG · 2022Article
- Perspectives and preferences regarding genomic secondary findings in underrepresented prenatal and pediatric populations: A mixed-methods approach.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Balancing scientific interests and the rights of participants in designing a recall by genotype study.European journal of human genetics : EJHG · 2021Article
- Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review.Human genomics · 2021Review
- Factors Influencing Participation in Biospecimen Research among Parents of Youth with Mental Health Conditions.Public health genomics · 2020Article
- Responsibility, culpability, and parental views on genomic testing for seriously ill children.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Using the diffusion of innovations model to guide participant engagement in the genomics era.Journal of genetic counseling · 2019Article
- Enrolling Genomics Research Participants through a Clinical Setting: the Impact of Existing Clinical Relationships on Informed Consent and Expectations for Return of Research Results.Journal of genetic counseling · 2018Article
- The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants.PloS one · 2018Article
- Parents' Understanding of Genetics and Heritability.Journal of genetic counseling · 2017Article
- Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research.Bioethics · 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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-driven recruitment: participation in genetic research and return of results. Our findings suggest that parents' preferences and perspectives may be specific to their child's disease and the needs of the family as a whole. Assessing the expectations of target research populations will be beneficial for developing best practices for pediatric genetic research, return of results, and genotype-driven recruitment.
Indexed as
Identifiers
What OpenQuestion 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 OpenQuestion graph.