ArticleGenetics in medicine : official journal of the American College of Medical Genetics2012
IRB perspectives on the return of individual results from genomic research.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 47 papers, 2 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
47 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- An electronic review of clinical outcomes after return of actionable genetic research results from a health system research biobank.European journal of medical genetics · 2025Trial
- A randomized study of digital versus genetic counselor return of actionable genetic research results to biobank participants (RESPECT3 study).BMC medical ethics · 2026Article
- Article
- Returning Individual-Level Urgent or Emergent Research Results to Participants: The Project Baseline Health Study Experience.American journal of medicine open · 2025Article
- Australian human research ethics committee members' confidence in reviewing genomic research applications.European journal of human genetics : EJHG · 2021Article
- 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
- Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.Public health genomics · 2021Article
- Shortened consent forms for genome-wide sequencing: Parent and provider perspectives.Molecular genetics & genomic medicine · 2020Article
- Return of genetic and genomic research findings: experience of a pediatric biorepository.BMC medical genomics · 2019Article
- Adolescent and Parental Attitudes About Return of Genomic Research Results: Focus Group Findings Regarding Decisional Preferences.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Reconceptualizing harms and benefits in the genomic age.Personalized medicine · 2018Article
- Ethical Issues in Contemporary Clinical Genetics.Mayo Clinic proceedings. Innovations, quality & outcomes · 2018Article
- Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants' Genomic Results.Public health genomics · 2018Article
- Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach.Journal of community genetics · 2017Article
- Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests.Genetic testing and molecular biomarkers · 2017Article
- 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
- Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors.
Funding
Abstract
purposeReturn of individual research results from genomic studies is a hotly debated ethical issue in genomic research. However, the perspective of key stakeholders-institutional review board (IRB) professionals-has been missing from this dialogue. This study explores the positions and experiences of IRB members and staff regarding this issue.
methodsIn-depth interviews with 31 IRB professionals at six sites across the United States.
resultsIRB professionals agreed that research results should be returned to research participants when results are medically actionable but only if the participants want to know the results. Many respondents expected researchers to address the issue of return of results (ROR) in the IRB application and informed-consent document. Many respondents were not comfortable with their expertise in genomics research and only a few described actual experiences in addressing ROR. Although participants agreed that guidelines would be helpful, most were reticent to develop them in isolation. Even where IRB guidance exists (e.g., Clinical Laboratory Improvement Act (CLIA) lab certification required for return), in practice, the guidance has been overruled to allow ROR (e.g., no CLIA lab performs the assay).
conclusionAn IRB-researcher partnership is needed to help inform responsible and feasible institutional approaches to returning research results.
Indexed as
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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.