ArticleEuropean journal of human genetics : EJHG2010
What is a meaningful result? Disclosing the results of genomic research in autism to research participants.
Article in European journal of human genetics : EJHG, 2010. 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
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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.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Research participants' perspectives regarding the feedback of secondary findings-A cohort from the DDD-Africa study, South Africa.Journal of genetic counseling · 2024Article
- Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers.Autism : the international journal of research and practice · 2024Article
- Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.Journal of empirical research on human research ethics : JERHRE · 2021Article
- Comprehensive Genetic Analysis of Non-syndromic Autism Spectrum Disorder in Clinical Settings.Journal of autism and developmental disorders · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Autism genetics: opportunities and challenges for clinical translation.Nature reviews. Genetics · 2017Review
- "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
- Parents' Perspectives on Variants of Uncertain Significance from Chromosome Microarray Analysis.Journal of genetic counseling · 2016Article
- Parents' perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders.Journal of autism and developmental disorders · 2015Article
- Adolescent perspectives on the return of individual results in genomic addiction research.Psychiatric genetics · 2015Article
- Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children.Clinical genetics · 2014Article
- Genetic testing and genetic counseling among Medicaid-enrolled children with autism spectrum disorder in 2001 and 2007.Human genetics · 2014Article
- Pathogenic rare copy number variants in community-based schizophrenia suggest a potential role for clinical microarrays.Human molecular genetics · 2013Article
- Priorities for autism spectrum disorder risk communication and ethics.Autism : the international journal of research and practice · 2013Article
- Does a duty of disclosure foster special treatment of genetic research participants?Journal of genetic counseling · 2013Article
- Empirical research on the ethics of genomic research.American journal of medical genetics. Part A · 2013Article
- Return of genetic results in the familial dilated cardiomyopathy research project.Journal of genetic counseling · 2013Article
- Parents' perspectives on participating in genetic research in autism.Journal of autism and developmental disorders · 2013Article
- Genomics and autism spectrum disorder.Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing · 2013Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether--and which results--to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results 'reportable' when results were perceived to explain cause, and answer the question 'why;' that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed 'true.' Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as 'true' depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is 'genetic.' For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders.
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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.