ArticleJournal of empirical research on human research ethics : JERHRE2011
Informed consent and genomic incidental findings: IRB chair perspectives.
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 31 papers, 4 of them syntheses 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
31 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Pooled it
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing.Genetics in medicine : official journal of the American College of Medical Genetics · 2013Guideline
- Expanding access to genomic analysis and reporting in research studies: The GENYSIS research core.Journal of clinical and translational science · 2026Article
- Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda.PloS one · 2022Article
- To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research.BMC medical ethics · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Towards precision nephrology: the opportunities and challenges of genomic medicine.Journal of nephrology · 2018Review
- Variation among Consent Forms for Clinical Whole Exome Sequencing.Journal of genetic counseling · 2018Article
- Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants' Genomic Results.Public health genomics · 2018Article
- Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond.Frontiers in genetics · 2017Article
- Article
- Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research.Bioethics · 2016Article
- Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research.Translational vision science & technology · 2016Article
- Article
- A Systematic Review of the Management of Incidental Findings in Genomic Research.BEOnline : journal of the West African bioethics training program · 2016Article
- Management of Incidental Findings in the Era of Next-generation Sequencing.Current genomics · 2015Article
- Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 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
6 authors.
Funding
Abstract
It is unclear how genomic incidental finding (GIF) prospects should be addressed in informed consent processes. An exploratory study on this topic was conducted with 34 purposively sampled Chairs of institutional review boards (IRBs) at centers conducting genome-wide association studies. Most Chairs (96%) reported no knowledge of local IRB requirements regarding GIFs and informed consent. Chairs suggested consent processes should address the prospect of, and study disclosure policy on, GIFs; GIF management and follow-up; potential clinical significance of GIFs; potential risks of GIF disclosure; an opportunity for participants to opt out of GIF disclosure; and duration of the researcher's duty to disclose GIFs. Chairs were concerned about participant disclosure preferences changing over time; inherent limitations in determining the scope and accuracy of claims about GIFs; and making consent processes longer and more complex. IRB Chair and other stakeholder perspectives can help advance informed consent efforts to accommodate GIF prospects.
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.