Evidence map›Paper›PMID 23068909›Full record

ArticlePatient education and counseling2013

Genetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting.

Nancy R Downing, Janet K Williams, Sandra Daack-Hirsch, Martha Driessnack, Christian M Simon

Open access · greenAbstract read
In one paragraph

Article in Patient education and counseling, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
35citing papers in PubMed, 2 pooled it
9.4field-weighted citation impact, top 2% of its field
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

35 citing papers in PubMed, 2 syntheses or guidelines pooled it, 62 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
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  7. Article
  8. Review
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  11. Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential Solutions.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020
    Article
  12. Article
  13. Article
  14. A RaDiCAL gene hunt.Journal of Taibah University Medical Sciences · 2017
    Review
  15. Article
  16. Article
  17. A Systematic Review of the Management of Incidental Findings in Genomic Research.BEOnline : journal of the West African bioethics training program · 2016
    Article
  18. Single-nucleotide polymorphism arrays and unexpected consanguinity: considerations for clinicians when returning results to families.Genetics in medicine : official journal of the American College of Medical Genetics · 2015
    Article
  19. Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015
    Article
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors at 1 institution in 1 country.

Nancy R DowningCollege of Nursing, The University of Iowa, Iowa City, IA, USA. nancy-downing@uiowa.edu
Janet K Williams
Sandra Daack-Hirsch
Martha Driessnack
Christian M Simon
University of Iowa · US

Funding

Managing Incidental Findings in the Genomic EraRC1HG005786 · NHGRI · UNIVERSITY OF IOWA · PI SIMON, CHRISTIAN MICHAEL, WILLIAMS, JANET K. · 2009 to 2010
$848k
NHGRI NIH HHS RC1 HG005786NHGRI NIH HHS RC1HG005786
6 · The paper itself

Abstract

objectiveEvidence documenting management of incidental findings (IFs) from clinical genomic testing is limited. The aim of this study was to examine genetics specialists' perspectives regarding current and preferred disclosure of clinical genomic IFs.

methods50 genetics specialists, including medical geneticists, laboratory professionals, genetic counselors, and nurses participated in structured telephone interviews. Data were analyzed using qualitative content analysis and descriptive statistics.

resultsMost specialists had encountered IFs, but definitions of IFs varied. They discussed challenges with informing patients about the prospect of IFs and disclosing IFs to patients. Causing psychological harm to patients was a concern. Participants were divided on whether IFs needed to be clinically significant and/or actionable in order to be disclosed to patients. Creating formal disclosure guidelines was considered useful, but only if they were flexible. Additional counseling, more interdisciplinary communication, maintaining contact with patients, and a centralized database to interpret IFs were also proposed.

conclusionGenetics specialists offer insights into the challenges of defining IFs, knowing when and how to disclose them, and the potential need for flexible disclosure guidelines. PRACTICE IMPLICATIONS: Further discussion between practicing genetics specialists is needed to develop consensus on the development of best-practice guidelines for IF management.

Indexed as

Attitude of Health PersonnelDisclosureGenomicsIncidental FindingsAdultAgedFemaleHumansInterviews as TopicMaleMiddle AgedQualitative ResearchSurveys and Questionnaires

Identifiers

PMID23068909
PMCPMC3522795
OpenAlexW1978572490

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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.