ArticleGenetics in medicine : official journal of the American College of Medical Genetics2014
Processes and factors involved in decisions regarding return of incidental genomic findings in research.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 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
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 29 citations in OpenAlex.
- 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
- Views of adults living with sickle cell disease on the theoretical return of secondary genomic findings.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Returning individual-specific results of a dementia prevalence study: insights from prospective participants living in Switzerland.International journal of geriatric psychiatry · 2021Article
- Experiences and perspectives on the return of secondary findings among genetic epidemiologists.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Normative and conceptual ELSI research: what it is, and why it's important.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Article
- "Not pathogenic until proven otherwise": perspectives of UK clinical genomics professionals toward secondary findings in context of a Genomic Medicine Multidisciplinary Team and the 100,000 Genomes Project.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- Research Participants' Preferences for Hypothetical Secondary Results from Genomic Research.Journal of genetic counseling · 2017Article
- Which Results to Return: Subjective Judgments in Selecting Medically Actionable Genes.Genetic testing and molecular biomarkers · 2017Article
- The fuzzy world of precision medicine: deliberations of a precision medicine tumor board.Personalized medicine · 2017Article
- Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.American journal of human genetics · 2016Article
- Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?Biopreservation and biobanking · 2016Article
- Incidental findings of uncertain significance: To know or not to know--that is not the question.BMC medical ethics · 2016Article
- So rare we need to hunt for them: reframing the ethical debate on incidental findings.Genome medicine · 2015Article
- Informed consent for return of incidental findings in genomic research.Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- Finding Fault? Exploring Legal Duties to Return Incidental Findings in Genomic Research.The Georgetown law journal · 2014Article
- Illustrative case studies in the return of exome and genome sequencing results.Personalized medicineArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 1 institution in 1 country.
Funding
Abstract
purposeStudies have begun exploring whether researchers should return incidental findings in genomic studies, and if so, which findings should be returned; however, how researchers make these decisions-the processes and factors involved-has remained largely unexplored.
methodsWe interviewed 28 genomics researchers in-depth about their experiences and views concerning the return of incidental findings.
resultsResearchers often struggle with questions concerning which incidental findings to return and how to make those decisions. Multiple factors shape their views, including information about the gene variant (e.g., pathogenicity and disease characteristics), concerns about participants' well-being and researcher responsibility, and input from external entities. Researchers weigh the evidence, yet they face conflicting pressures, with relevant data frequently being unavailable. Researchers vary in who they believe should decide: participants, principal investigators, institutional review boards, and/or professional organizations. Contextual factors can influence these decisions, including policies governing return of results by institutions and biobanks and the study design. Researchers vary in desires for: guidance from institutions and professional organizations, changes to current institutional processes, and community-wide genetics education.
conclusionThese data, the first to examine the processes by which researchers make decisions regarding the return of genetic incidental findings, highlight several complexities involved and have important implications for future genetics research, policy, and examinations of these issues.
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.