ArticleGenetic testing and molecular biomarkers2012
Researcher and institutional review board chair perspectives on incidental findings in genomic research.
Article in Genetic testing and molecular biomarkers, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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
21 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
- To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research.BMC medical ethics · 2021Article
- Returning individual-specific results of a dementia prevalence study: insights from prospective participants living in Switzerland.International journal of geriatric psychiatry · 2021Article
- Big Data Privacy in Biomedical Research.IEEE transactions on big data · 2020Article
- Perspectives of psychiatric investigators and IRB chairs regarding benefits of psychiatric genetics research.Journal of psychiatric research · 2018Article
- Article
- Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- A Systematic Review of the Management of Incidental Findings in Genomic Research.BEOnline : journal of the West African bioethics training program · 2016Article
- Article
- Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research.Journal of genetic counseling · 2015Article
- Management of Incidental Findings in the Era of Next-generation Sequencing.Current genomics · 2015Article
- So rare we need to hunt for them: reframing the ethical debate on incidental findings.Genome medicine · 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
- Processes and factors involved in decisions regarding return of incidental genomic findings in research.Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- Experiences and attitudes of genome investigators regarding return of individual genetic test results.Genetics in medicine : official journal of the American College of Medical Genetics · 2013Article
- The disclosure of incidental genomic findings: an "ethically important moment" in pediatric research and practice.Journal of community genetics · 2013Article
- A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs.Journal of genetic counseling · 2013Article
- The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research.Clinical sarcoma research · 2013Article
- 'Information is information': a public perspective on incidental findings in clinical and research genome-based testing.Clinical genetics · 2013Article
- Incidental variants are critical for genomics.American journal of human genetics · 2013Article
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
aimsGenomic research can produce findings unrelated to a study's aims. The purpose of this study was to examine researcher and Institutional Review Board (IRB) chair perspectives on genomic incidental findings (GIFs).
methodsNineteen genomic researchers and 34 IRB chairs from 42 institutions participated in semi-structured telephone interviews. Researchers and chairs described GIFs within their respective roles. Few had direct experience with disclosure of GIFs. Researchers favored policies where a case by case determination regarding whether GIF disclosure would be offered after discovery, whereas IRB chairs preferred policies where procedures for disclosure would be determined prior to approval of the research.
conclusionsResearcher and IRB chair perspectives on management of GIFs overlap, but each group provides a unique perspective on decisions regarding disclosure of GIFs in research. Engagement of both groups is essential in efforts to provide guidance for researchers and IRBs regarding disclosure of GIFs in research.
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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.