ArticleGenetics in medicine : official journal of the American College of Medical Genetics2017
Is "incidental finding" the best term?: a study of patients' preferences.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
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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.
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Who cites it
21 citing papers in PubMed.
- ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Trial
- Article
- Pancreatic incidentaloma: incidental findings from history towards the era of liquid biopsy.eGastroenterology · 2024Review
- Article
- Incidental findings from cancer next generation sequencing panels.NPJ genomic medicine · 2021Article
- The impact of unsolicited findings in clinical exome sequencing, a qualitative interview study.European journal of human genetics : EJHG · 2021Article
- Evaluating the resource implications of different service delivery models for offering additional genomic findings.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Analogies in Genomics Policymaking: Debates and Drawbacks.American journal of human genetics · 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
- Whole genome sequencing reveals that genetic conditions are frequent in intensively ill children.Intensive care medicine · 2019Article
- The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results.American journal of human genetics · 2019Article
- Renal genetics in Australia: Kidney medicine in the genomic age.Nephrology (Carlton, Vic.) · 2019Review
- Incidental or secondary findings: an integrative and patient-inclusive approach to the current debate.European journal of human genetics : EJHG · 2018Article
- Additional germline findings from a tumor profiling program.BMC medical genomics · 2018Article
- The Genomics ADvISER: development and usability testing of a decision aid for the selection of incidental sequencing results.European journal of human genetics : EJHG · 2018Article
- Preconception Carrier Screening by Genome Sequencing: Results from the Clinical Laboratory.American journal of human genetics · 2018Article
- Attitudes of stakeholders in psychiatry towards the inclusion of children in genomic research.Human genomics · 2018Article
- Meeting report of the 2017 KidGen Renal Genetics Symposium.Human genomics · 2018Article
- Points to consider for laboratories reporting results from diagnostic genomic sequencing.European journal of human genetics : EJHG · 2018Article
- Sudden Arrhythmic Death During Exercise: A Post-Mortem Genetic Analysis.Sports medicine (Auckland, N.Z.) · 2017Article
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
purposeThere is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we sought the opinion of clinical genetics patients.
methodsSurveys and focus groups with two patient populations were conducted. Eighty-eight survey participants were asked to rank four terms according to how well each describes results unrelated to the test indication: incidental findings, secondary findings, additional findings, and ancillary findings. Participants in six focus groups were guided through a free-thought exercise to describe the desired attributes of such a term and then asked to formulate the best term to represent this concept.
resultsThe term additional findings had the most first-choice rankings by survey participants, followed by secondary findings, incidental findings, and ancillary findings. Most focus group participants preferred the term additional findings; they also gave reasons why other terms were not optimal.
conclusionAdditional findings was preferred because it was more neutral and accessible than other terms currently in use. Patient perceptions and comprehension will be framed by the terminology used by healthcare providers. Thus, patient opinions should be considered by medical genetics professionals.Genet Med 19 2, 176-181.
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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.