GuidelineAmerican journal of medical genetics. Part A2006
Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.
Guideline in American journal of medical genetics. Part A, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01441141 (Exploratory Studies of Psychophysical Pain Phenotyping and Genetic Variability in Sickle Cell Disease), which is not on this map. Cited by 126 papers, 3 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.
Exploratory Studies of Psychophysical Pain Phenotyping and Genetic Variability in Sickle Cell Disease
Who cites it
126 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Guideline for feedback of individual genetic research findings for genomics research in Africa.BMJ global health · 2022Guideline
- Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.Circulation. Cardiovascular genetics · 2010Guideline
- Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.American journal of medical genetics. Part A · 2006Guideline
- Willingness to donate biosamples to a national biobank in Israel: a population-based cross-sectional survey.Israel journal of health policy research · 2026Article
- Epigenetic Age Feedback as a Catalyst for Sustained Lifestyle Change: One-Year Results from the EU iHelp Study.Epigenomes · 2026Article
- Opportunities to improve open All of Us data to convey CYP2D6 pharmacological relevance and interpretation overall and according to ancestry.Frontiers in pharmacology · 2026Article
- Expanding access to genomic analysis and reporting in research studies: The GENYSIS research core.Journal of clinical and translational science · 2026Article
- Ethical, Legal, and Social Implications of Gene-Environment Interaction Research.Genetic epidemiology · 2025Review
- Nephrologists' Views on a Workflow for Returning Genetic Results to Research Participants.Kidney international reports · 2024Article
- Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.Journal of community genetics · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research.BMC medical ethics · 2021Article
- Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.European journal of human genetics : EJHG · 2021Article
- Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research.Methods in molecular biology (Clifton, N.J.) · 2021Article
- Review
- Genomics and Infectious Diseases: Expert Perspectives on Public Health Considerations regarding Actionability and Privacy.Ethics & human research · 2020Article
- Pathogenic and Uncertain Genetic Variants Have Clinical Cardiac Correlates in Diverse Biobank Participants.Journal of the American Heart Association · 2020Article
- Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Psychiatric genetics researchers' views on offering return of results to individual participants.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2019Article
66 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors.
Funding
Abstract
Prospective epidemiologic studies aid in identifying genetic variants associated with diseases, health risks, and physiologic traits. These genetic variants may eventually be measured clinically for purposes of diagnosis, prognosis, and treatment. As evidence of the potential clinical value of such information accrues, research studies face growing pressure to report these results to study participants or their physicians, even before sufficient evidence is available to support widespread screening of asymptomatic persons. There is thus a need to begin to develop consensus on whether and when genetic findings should be reported to participants in research studies. The National Heart, Lung, and Blood Institute (NHLBI) convened a Working Group on Reporting Genetic Results in Research Studies to discuss if, when, and how genetic information should be reported to study participants. The Working Group concluded that genetic test results should be reported to study participants when the associated risk for the disease is significant; the disease has important health implications such as premature death or substantial morbidity or has significant reproductive implications; and proven therapeutic or preventive interventions are available. Finally, the Working Group recommended procedures for reporting genetic research results and encouraged increased efforts to create uniform guidelines for this activity.
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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.