ArticleBMC medical ethics2016
Incidental findings of uncertain significance: To know or not to know--that is not the question.
Article in BMC medical ethics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 25 papers.
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
25 citing papers in PubMed.
- Underdiagnosis of Health: A Key Driver of Overdiagnosis of Disease.Journal of evaluation in clinical practice · 2026Article
- Liquid biopsies for early detection and monitoring of cancer: advances, challenges, and future directions.Annals of medicine and surgery (2012) · 2025Review
- Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.Journal of community genetics · 2024Article
- Viral genome sequencing methods: benefits and pitfalls of current approaches.Biochemical Society transactions · 2024Review
- Whole genome sequencing in (recurrent) glioblastoma: challenges related to informed consent procedures and data sharing.Acta neurochirurgica · 2024Review
- Biases in bioethics: a narrative review.BMC medical ethics · 2023Review
- Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.PloS one · 2022Article
- The impact of reporting magnetic resonance imaging incidental findings in the Canadian alliance for healthy hearts and minds cohort.BMC medical ethics · 2021Article
- Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants.Journal of community genetics · 2021Article
- Improving diagnostics of rare genetic diseases with NGS approaches.Journal of community genetics · 2021Article
- Implementation outcomes of Humanwide: integrated precision health in team-based family practice primary care.BMC family practice · 2021Article
- A Just Standard: The Ethical Management of Incidental Findings in Brain Imaging Research.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2021Article
- Genetic testing for breast cancer risk, from BRCA1/2 to a seven gene panel: an ethical analysis.BMC medical ethics · 2020Article
- Future directions for screening and treatment in congenital hearing loss.Precision clinical medicine · 2020Article
- The right not to know and the obligation to know.Journal of medical ethics · 2020Article
- Rethinking the "open future" argument against predictive genetic testing of children.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Association of variants in HTRA1 and NOTCH3 with MRI-defined extremes of cerebral small vessel disease in older subjects.Brain : a journal of neurology · 2019Article
- Managing "incidental findings" in biobank research: Recommendations of the Taiwan biobank.Computational and structural biotechnology journal · 2019Review
- Responsibility, identity, and genomic sequencing: A comparison of published recommendations and patient perspectives on accepting or declining incidental findings.Molecular genetics & genomic medicine · 2018Article
- Incidental or secondary findings: an integrative and patient-inclusive approach to the current debate.European journal of human genetics : EJHG · 2018Article
Corrections and comments
- Erratum issued
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAlthough the "right not to know" is well established in international regulations, it has been heavily debated. Ubiquitous results from extended exome and genome analysis have challenged the right not to know. American College of Medical Genetics and Genomics (ACMG) Recommendations urge to inform about incidental findings that pretend to be accurate and actionable. However, ample clinical cases raise the question whether these criteria are met. Many incidental findings are of uncertain significance (IFUS). The eager to feedback information appears to enter the field of IFUS and thereby threaten the right not to know. This makes it imperative to investigate the arguments for and against a right not to know for IFUS. DISCUSSION: This article investigates how the various arguments for and against a right not to know hold for IFUS. The main investigated arguments are: hypothetical utilitarianism, the right-based argument, the feasibility argument, the value of knowledge argument, the argument from lost significance, the empirical argument, the duty to disclose argument, the avoiding harm argument; the argument from principle, from autonomy, from privacy, as well as the argument from the right to an open future. The analysis shows that both sides in the debate have exaggerated the importance of incidental findings. Opponents of a right not to know have exaggerated the importance of IFUS, while proponents have exaggerated the need to be protected from something that is not knowledge. Hence, to know or not to know is not the question. The question is whether we should be able to stay ignorant of incidental findings of uncertain significance, if we want to. The answer is yes: As long as the information is not accurate and/or actionable: ignorance is bliss. When answering questions that are not asked, we need to think twice.
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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.