ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2008
Understanding incidental findings in the context of genetics and genomics.
Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01568684 (Pharmacogenetics and Neuroimaging in Major Depressive Disorder), which is not on this map. Cited by 59 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.
Pharmacogenetics and Neuroimaging in Major Depressive Disorder (PAN-D)
Who cites it
59 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts.European journal of human genetics : EJHG · 2013Pooled it
- Data-driven sudden cardiac arrest research in Europe: Experts' perspectives on ethical challenges and governance strategies.Resuscitation plus · 2023Review
- Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.PloS one · 2022Article
- Disclosing Individual Results in Dementia Research: A Proposed Study Participant's Bill of Rights.Journal of Alzheimer's disease : JAD · 2022Article
- Health-care practitioners' preferences for the return of secondary findings from next-generation sequencing: a discrete choice experiment.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Genomics and Infectious Diseases: Expert Perspectives on Public Health Considerations regarding Actionability and Privacy.Ethics & human research · 2020Article
- Points-to-consider on the return of results in epigenetic research.Genome medicine · 2019Review
- Privacy and ethical challenges in next-generation sequencing.Expert review of precision medicine and drug development · 2019Article
- Potential and pitfalls in the genetic diagnosis of kidney diseases.Clinical kidney journal · 2017Article
- Article
- Next-Generation Sequencing and the Return of Results.Cold Spring Harbor perspectives in medicine · 2016Review
- A protocol for the identification and validation of novel genetic causes of kidney disease.BMC nephrology · 2015Article
- Management of Incidental Findings in the Era of Next-generation Sequencing.Current genomics · 2015Article
- Ethical considerations in biobanks: how a public health ethics perspective sheds new light on old controversies.Journal of genetic counseling · 2015Article
- How can psychological science inform research about genetic counseling for clinical genomic sequencing?Journal of genetic counseling · 2015Article
- To disclose, or not to disclose? Context matters.European journal of human genetics : EJHG · 2015Article
- Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Incidental findings from clinical genome-wide sequencing: a review.Journal of genetic counseling · 2014Review
- Three clinical experiences with SNP array results consistent with parental incest: a narrative with lessons learned.Journal of genetic counseling · 2014Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
Abstract
Human genetic and genomic research can yield information that may be of clinical relevance to the individuals who participate as subjects of the research. It has been common practice among researchers to notify participants during the informed consent process that no individual results will be disclosed, "incidental" or otherwise. However, as genetic information obtained in research becomes orders of magnitude more voluminous, increasingly accessible online, and more informative, this precedent may no longer be appropriate. There is not yet consensus on the responsibilities of researchers to disclose individual research results to research participants. Empirical research suggests that participants want to know individual research results. On the other hand, the increased resolution and power afforded by new genomic analyses may lead to findings of statistical, but not necessarily clinical, significance. This paper addresses the issues to be considered in deciding whether and how to disclose "incidental" findings or other findings of clinical significance that arise in the course of human genomic and genetic research. What research results should be offered, and what should not be offered? For which research should individual results be offered to research participants, when should they be offered, how, and to whom?
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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.