Evidence map›Paper›PMID 35522237›Full record

Trial reportGenetics in medicine : official journal of the American College of Medical Genetics2022

ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial.

Elizabeth G Liles, Michael C Leo, Amanda S Freed, Kathryn M Porter, Jamilyn M Zepp, Tia L Kauffman, Erin Keast, Carmit K McMullen, Inga Gruß, Barbara B Biesecker and 8 more

Abstract readRandomized Controlled Trial
In one paragraph

Trial report in Genetics in medicine : official journal of the American College of Medical Genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
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

2 citing papers in PubMed.

  1. Article
  2. 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

18 authors.

Elizabeth G LilesKaiser Permanente Center for Health Research, Portland, OR. Electronic address: Beth.G.Liles@kpchr.org.
Michael C LeoKaiser Permanente Center for Health Research, Portland, OR.
Amanda S FreedDivision of Medical Genetics, Department of Medicine, University of Washington Medical Center, Seattle, WA.
Kathryn M PorterTreuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA.
Jamilyn M ZeppDepartment of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, OR.
Tia L KauffmanKaiser Permanente Center for Health Research, Portland, OR.
Erin KeastKaiser Permanente Center for Health Research, Portland, OR.
Carmit K McMullenKaiser Permanente Center for Health Research, Portland, OR.
Inga GrußKaiser Permanente Center for Health Research, Portland, OR.
Barbara B BieseckerGenetics, Bioinformatics and Translation, RTI International, Washington, D.C.
Kristin R MuessigDepartment of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, OR.
Donna J EubanksKaiser Permanente Center for Health Research, Portland, OR.
Laura M AmendolaDivision of Medical Genetics, Department of Medicine, University of Washington Medical Center, Seattle, WA.
Michael O DorschnerDivision of Medical Genetics, Department of Medicine, University of Washington Medical Center, Seattle, WA.
Bradley A RolfDivision of Medical Genetics, Department of Medicine, University of Washington Medical Center, Seattle, WA.
Gail P JarvikDivision of Medical Genetics, Department of Medicine, University of Washington Medical Center, Seattle, WA.
Katrina A B GoddardDepartment of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, OR.
Benjamin S WilfondTreuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA.

Funding

Exome sequencing in Diverse Populations in Colorado & OregonU01HG007292 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI LEO, MICHAEL C, WILFOND, BENJAMIN SIMON · 2017 to 2021
$15.7M
Clinical Implementation of Carrier Testing using NGSUM1HG007292 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI GODDARD, KATRINA A., WILFOND, BENJAMIN SIMON · 2013 to 2016
$8.2M
Medical Genetics Training GrantT32GM007454 · NIGMS · UNIVERSITY OF WASHINGTON · PI Gail Pairitz Jarvik, Andrew Ben Stergachis · 1985 to 2026
$6.9M
CSER RoRC Centralized Support Coordinating CenterU01HG007307 · NHGRI · UNIVERSITY OF WASHINGTON · PI BURKE, WYLIE G., JARVIK, GAIL PAIRITZ · 2013 to 2016
$3.6M
NHGRI NIH HHS U01 HG007292NHGRI NIH HHS U01 HG007307NHGRI NIH HHS UM1 HG007292NIGMS NIH HHS T32 GM007454
6 · The paper itself

Abstract

purposeIndividuals having genomic sequencing can choose to be notified about pathogenic variants in genes unrelated to the testing indication. A decision aid can facilitate weighing one's values before making a choice about these additional results.

methodsWe conducted a randomized trial (N = 231) comparing informed values-choice congruence among adults at risk for a hereditary cancer syndrome who viewed either the Optional Results Choice Aid (ORCA) or web-based additional findings information alone. ORCA is values-focused with a low-literacy design.

resultsIndividuals in both arms had informed values-choice congruence (75% and 73% in the decision aid and web-based groups, respectively; odds ratio [OR] = 1.10, 95% CI = 0.58-2.08). Most participants had adequate knowledge (79% and 76% in the decision aid and web-based groups, respectively; OR = 1.20, 95% CI = 0.61-2.34), with no significant difference between groups. Most had information-seeking values (97% and 98% in the decision aid and web-based groups, respectively; OR = 0.59, 95% CI = 0.10-3.61) and chose to receive additional findings.

conclusionThe ORCA decision aid did not significantly improve informed values-choice congruence over web-based information in this cohort of adults deciding about genomic results. Both web-based approaches may be effective for adults to decide about receiving medically actionable additional results.

Indexed as

Decision Support TechniquesGenomicsAdultBase SequenceChromosome MappingDecision MakingHumansDecision aidGenomic sequencingIncidental resultsInformed consentSecondary findings

Identifiers

PMID35522237
PMCPMC9586129

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.