ArticleJournal of community genetics2013
The disclosure of incidental genomic findings: an "ethically important moment" in pediatric research and practice.
Article in Journal of community genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 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
16 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
- Understanding the decision of parents to opt-out of medically actionable secondary findings offered through genome sequencing.Journal of genetic counseling · 2026Article
- The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust.Orphanet journal of rare diseases · 2019Article
- Genomic sequencing identifies secondary findings in a cohort of parent study participants.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- Responsibility, identity, and genomic sequencing: A comparison of published recommendations and patient perspectives on accepting or declining incidental findings.Molecular genetics & genomic medicine · 2018Article
- Preferences for the provision of whole genome sequencing services among young adults.PloS one · 2017Article
- Article
- Whole-exome sequencing in pediatrics: parents' considerations toward return of unsolicited findings for their child.European journal of human genetics : EJHG · 2016Article
- A Systematic Review of the Management of Incidental Findings in Genomic Research.BEOnline : journal of the West African bioethics training program · 2016Article
- Utilization of genetic testing among children with developmental disabilities in the United States.The application of clinical genetics · 2016Article
- Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions.Medicine, health care, and philosophy · 2015Article
- Single-nucleotide polymorphism arrays and unexpected consanguinity: considerations for clinicians when returning results to families.Genetics in medicine : official journal of the American College of Medical Genetics · 2015Article
- Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases.Journal of medical ethics · 2014Article
- The importance of patient engagement.Genetic testing and molecular biomarkers · 2013Article
- 'Information is information': a public perspective on incidental findings in clinical and research genome-based testing.Clinical genetics · 2013Article
- Models of consent to return of incidental findings in genomic research.The Hastings Center reportArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
Although there are numerous position papers on the issues and challenges surrounding disclosure of incidental genomic findings involving children, there is very little research. To fill this gap, the purpose of this study was to explore the perspectives of multiple professional (N = 103) and public (N = 63) stakeholders using both interviews and focus groups. Using qualitative analysis, we identified one overarching theme, "It's hard for us; it's hard for them," and three subthemes/questions: "What to disclose?," "Who gets the information?," and "What happens later?" Perspectives differed between professional (Institutional Review Board chairs, clinicians, and researchers) and public stakeholders. While professionals focused on the complexities of what to disclose, the lay public stated that parents should have all information laid out for them. Professionals pondered multiple parent and child situations, while the public identified parents as informational gatekeepers who know their children best. Professionals described the potential requirement for follow-up over time as a logistical "nightmare," while the public believed that parents have the responsibility for managing their children's health information over time. However, the parent role as gatekeeper was seen as time limited and in need of professional support and backup. Our findings present a case for needed dialogue around what we propose as an "ethically important moment," with the goal of protecting and respecting the viewpoints of all stakeholders when policies regarding children are developed.
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.