Evidence map›Paper›PMID 31189963›Full record

SynthesisGenetics in medicine : official journal of the American College of Medical Genetics2019

Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies.

Jill O Robinson, Julia Wynn, Barbara Biesecker, Leslie G Biesecker, Barbara Bernhardt, Kyle B Brothers, Wendy K Chung, Kurt D Christensen, Robert C Green, Amy L McGuire and 7 more

Abstract readMeta-Analysis
In one paragraph

Synthesis in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 54 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
54citing papers in PubMed, 2 pooled it
–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

54 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Trial
  4. Review
  5. Article
  6. A scalable new model of germline cancer genomic care delivery: Assessing psychological outcomes.Genetics in medicine : official journal of the American College of Medical Genetics · 2026
    Article
  7. Article
  8. Article
  9. Article
  10. Article
  11. Article
  12. Article
  13. Review
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
  19. 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

17 authors.

Jill O RobinsonCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
Julia WynnDepartment of Pediatrics, Columbia University Medical Center, New York, NY, USA.ORCID http://orcid.org/0000-0002-5220-6022
Barbara BieseckerRTI, International D.C. Office, Washington, DC, USA.
Leslie G BieseckerMedical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, Bethesda, MD, USA.
Barbara BernhardtDivision of Translational Medicine and Human Genetics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
Kyle B BrothersDepartment of Pediatrics, University of Louisville School of Medicine, Louisville, KY, USA.ORCID http://orcid.org/0000-0002-8550-9724
Wendy K ChungDepartment of Pediatrics, Columbia University Medical Center, New York, NY, USA.
Kurt D ChristensenDepartment of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0003-4068-776X
Robert C GreenDepartment of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0001-8472-0424
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
M Ragan HartDepartment of Biomedical Data Science, Stanford University, Stanford, CA, USA.
Ida GriesemerDepartment of Health Behavior, University of North Carolina, Chapel Hill, NC, USA.ORCID http://orcid.org/0000-0001-6556-2520
Donald L PatrickDepartment of Health Services, University of Washington, Seattle, WA, USA.
Christine RiniJohn Theurer Cancer Center, Hackensack University Medical Center, Hackensack, NJ, USA.
David VeenstraClinical Sequencing Exploratory Research Coordinating Center, University of Washington, Seattle, WA, USA.
Angel M CroninCorrona, LLC, Waltham, MA, USA.
Stacy W GrayDepartment of Population Science, City of Hope, Duarte, CA, USA. stagray@coh.org.ORCID http://orcid.org/0000-0001-6948-0143

Funding

CTSA INFRASTRUCTURE FOR PEDIATRIC RESEARCHUL1RR024156 · NCRR · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI GINSBERG, HENRY N · 2006 to 2011
$53.0M
Clinical and Translational Science AwardUL1TR000040 · NCATS · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI GINSBERG, HENRY N · 2012 to 2015
$26.2M
North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing 2U01HG006487 · NHGRI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI BERG, JONATHAN S, POWELL, BRADFORD C. · 2012 to 2021
$22.7M
Genomic Ascertainment - Molecular and Genetic AspectsZIAHG200359 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI BIESECKER, LESLIE · 2009 to 2025
$19.7M
Genomic Ascertainment - Clinical and Behavioral AspectsZIAHG200387 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI BIESECKER, LESLIE · 2013 to 2025
$15.5M
OMOP information model for eMERGE phenotypingU01HG008680 · NHGRI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Wendy K Chung, GEORGE M HRIPCSAK · 2015 to 2026
$13.3M
South-seq: DNA sequencing for newborn nurseries in the SouthU01HG007301 · NHGRI · HUDSON-ALPHA INSTITUTE FOR BIOTECHNOLOGY · PI BARSH, GREGORY STEFAN, COOPER, GREGORY MICHAEL · 2017 to 2021
$11.9M
Integration of Whole Genome Sequencing into Clinical MedicineU01HG006500 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C. · 2012 to 2016
$11.5M
Clinical sequencing in cancer: Clinical ethical and technological studiesU01HG006507 · NHGRI · UNIVERSITY OF WASHINGTON · PI JARVIK, GAIL PAIRITZ · 2012 to 2016
$10.6M
Applying Genomic Sequencing in PediatricsU01HG006546 · NHGRI · CHILDREN'S HOSP OF PHILADELPHIA · PI KRANTZ, IAN D. · 2012 to 2016
$10.6M
The Use of Whole-Exome Sequencing to Guide the Care of Cancer PatientsU01HG006492 · NHGRI · DANA-FARBER CANCER INST · PI JANNE, PASI A, VAN ALLEN, ELIEZER M · 2012 to 2016
$7.3M
Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral GeneticsP50HG007257 · NHGRI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI APPELBAUM, PAUL STUART · 2013 to 2017
$5.4M
Intramural NIH HHS ZIA HG200359Intramural NIH HHS ZIA HG200387NCATS NIH HHS UL1 TR000040NCATS NIH HHS UL1TR000040NCRR NIH HHS UL1 RR024156NCRR NIH HHS UL1RR024156NHGRI NIH HHS P50 HG007257NHGRI NIH HHS P50HG007257NHGRI NIH HHS R01 HG006600NHGRI NIH HHS R01HG006600NHGRI NIH HHS R21 HG006596NHGRI NIH HHS R21HG006596NHGRI NIH HHS U01 HG006487NHGRI NIH HHS U01HG006487NHGRI NIH HHS U01 HG006492NHGRI NIH HHS U01HG006492NHGRI NIH HHS U01 HG006500NHGRI NIH HHS U01HG006500NHGRI NIH HHS U01 HG006507NHGRI NIH HHS U01HG006507NHGRI NIH HHS U01 HG006546NHGRI NIH HHS U01HG006546NHGRI NIH HHS U01 HG007301NHGRI NIH HHS U01 HG007307NHGRI NIH HHS U01HG007307NHGRI NIH HHS U01 HG008680NHGRI NIH HHS ZIAHG200359 09NHGRI NIH HHS ZIAHG200387 04
6 · The paper itself

Abstract

purposeAs exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants' psychological outcomes across multiple clinical settings.

methodsWe conducted a random effects meta-analysis of state anxiety (Hospital Anxiety and Depression Scale [HADS]/Generalized Anxiety Disorder 7-item), depressive symptoms (HADS/Personal Health Questionnaire 9-item), and multidimensional impact (i.e., test-related distress, uncertainty and positive impact: modified Multidimensional Impact of Cancer Risk Assessment/Feelings About Genomic Testing Results scale).

resultsAnxiety and depression did not increase significantly following test result disclosure. Meta-analyses examining mean differences from pre- to postdisclosure revealed an overall trend for a decrease in participants' anxiety. We observed low levels of test-related distress and perceptions of uncertainty in some populations (e.g., pediatric patients) and a wide range of positive responses.

conclusionOur findings across multiple clinical settings suggest no clinically significant psychological harms from the return of ES/GS results. Some populations may experience low levels of test-related distress or greater positive psychological effects. Future research should further investigate the reasons for test-related psychological response variation.

Indexed as

AdultAnxietyChromosome MappingDepressionDisclosureEmotionsExomeExome SequencingFemaleGenetic TestingGenomicsHumansMaleStress, PsychologicalUncertaintyexome sequencinggenome sequencingpatient-reported outcomespsychological effectreturn of results

Identifiers

PMID31189963
PMCPMC7260995

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.