Evidence map›Paper›PMID 32349224›Full record

ArticleJournal of personalized medicine2020

Returning Results in the Genomic Era: Initial Experiences of the eMERGE Network.

Georgia L Wiesner, Alanna Kulchak Rahm, Paul Appelbaum, Sharon Aufox, Sarah T Bland, Carrie L Blout, Kurt D Christensen, Wendy K Chung, Ellen Wright Clayton, Robert C Green and 22 more

Open access · goldAbstract read
In one paragraph

Article in Journal of personalized medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers.

0numbers the graph read from it
0cells of the map it votes in
31citing papers in PubMed
7.6field-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

31 citing papers in PubMed, 48 citations in OpenAlex.

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  14. Impact of returning unsolicited genomic results to nongenetic health care providers in the eMERGE III Network.Genetics in medicine : official journal of the American College of Medical Genetics · 2022
    Article
  15. Article
  16. The reckoning: The return of genomic results to 1444 participants across the eMERGE3 Network.Genetics in medicine : official journal of the American College of Medical Genetics · 2022
    Article
  17. Article
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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

32 authors at 14 institutions in 1 country.

Georgia L WiesnerVanderbilt Clinical and Translational Hereditary Cancer Program, Vanderbilt-Ingram Cancer Center, and Department of Medicine, Vanderbilt University Medical Center, Nashville, TN 37232, USA.
Alanna Kulchak RahmGenomic Medicine Institute, Geisinger, Danville, PA 17822, USA.
Paul AppelbaumDepartment of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, NY 10027, USA.ORCID 0000-0002-1940-0042
Sharon AufoxDepartment of Obstetrics and Gynecology, Feinberg School of Medicine, Northwestern University, Chicago, IL 60611, USA.
Sarah T BlandDepartment of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37232, USA.ORCID 0000-0001-7946-6935
Carrie L BloutDepartment of Medicine Brigham and Women's Hospital and Harvard Medical School, Boston, MA 02115, USA.
Kurt D ChristensenHarvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MA 02115, USA.
Wendy K ChungDepartment of Pediatrics and Department of Medicine, Columbia University, New York, NY 10027, USA.
Ellen Wright ClaytonCenter for Biomedical Ethics and Society and Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN 37232, USA.ORCID 0000-0002-0308-4110
Robert C GreenDivision of Genetics, Department of Medicine, Brigham and Women's Hospital, Broad Institute of MIT and Harvard, Cambridge, MA 02142, USA.
Margaret H HarrCenter for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
Nora HenriksonKaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA.ORCID 0000-0002-3459-7787
Christin HoellCenter for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.
Ingrid A HolmDivision of Genetics and Genomics, Boston Children's Hospital and Department of Pediatrics, Harvard Medical School, Boston, MA 02115, USA.ORCID 0000-0003-4712-8821
Gail P JarvikDepartments of Medicine, Division of Medical Genetics and Genome Sciences, University of Washington, Seattle, WA 98195, USA.
Iftikhar J KulloDepartment of Cardiovascular Medicine, Mayo Clinic, Rochester, MN 55902, USA.
Philip E LammersDepartment of Internal Medicine, Meharry Medical College, Nashville, TN 37208, USA.
Eric B LarsonKaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA.
Noralane M LindorDepartment of Health Sciences Research, Mayo Clinic Arizona, Scottsdale, AZ 85259, USA.
Maddalena MarasaDepartment of Medicine, Division of Nephrology, Columbia University, New York, NY 10032, USA.
Melanie F MyersDepartment of Pediatrics, Cincinnati Children's Hospital Medical Center, College of Medicine, University of Cincinnati, Cincinnati, OH 45229, USA.
Josh F PetersonDepartment of Medicine and Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37232, USA.
Cynthia A ProwsDepartment of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH 45229, USA.
James D RalstonKaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA.
Hila Milo RasoulyDepartment of Medicine, Division of Nephrology, Columbia University, New York, NY 10032, USA.ORCID 0000-0002-0770-2190
Richard R SharpBiomedical Ethics Program, Mayo Clinic, Rochester, MN 55902, USA.ORCID 0000-0001-5441-2084
Maureen E SmithDepartment of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL 60611, USA.ORCID 0000-0001-9480-1092
Sara L Van DriestDepartment of Pediatrics and Department of Medicine, Vanderbilt University Medical Center, Nashville, TN 37232, USA.ORCID 0000-0003-2580-1405
Janet L WilliamsGenomic Medicine Institute, Geisinger, Danville, PA 17822, USA.ORCID 0000-0002-4604-3933
Marc S WilliamsGenomic Medicine Institute, Geisinger, Danville, PA 17822, USA.
Julia WynnDepartment of Pediatrics, Columbia University, New York, NY 10027, USA.
Kathleen A LeppigGenetic Services and Kaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA.
Columbia University · USVanderbilt University Medical Center · USKaiser Permanente Washington Health Research Institute · USNorthwestern University · USCincinnati Children's Hospital Medical Center · USMayo Clinic in Arizona · USBoston Children's Hospital · USBrigham and Women's Hospital · USBroad Institute · USChildren's Hospital of Philadelphia · USHarvard University · USMayo Clinic · USMeharry Medical College · USUniversity of Washington Medical Center · US

Funding

The Harvard Clinical and Translational Science CenterUL1TR002541 · NCATS · HARVARD MEDICAL SCHOOL · PI NADLER, LEE MARSHALL · 2018 to 2022
$93.0M
Genomic Basis of Susceptibility to COVID-19 Infection and its ComplicationsU01HG006379 · NHGRI · MAYO CLINIC ROCHESTER · PI Richard R. Sharp · 2011 to 2026
$16.5M
Finding Genomic Profiles of COVID-19 Phenotypes from the EHRU01HG008685 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI ELIZABETH W KARLSON, Matthew S Lebo · 2015 to 2026
$13.6M
Variation, Function, and Disease Supplement ProgramU01HG008657 · NHGRI · UNIVERSITY OF WASHINGTON · PI David Russell Crosslin, Gail Pairitz Jarvik · 2015 to 2026
$13.4M
OMOP information model for eMERGE phenotypingU01HG008680 · NHGRI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Wendy K Chung, GEORGE M HRIPCSAK · 2015 to 2026
$13.3M
DNA Sequencing Support for the eMERGE NetworkU01HG008664 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI GIBBS, RICHARD A · 2015 to 2019
$10.9M
Global Alliance for Genomic Health (GA4GH)U01HG008676 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI LENNON, NIALL JOHN, REHM, HEIDI L · 2015 to 2019
$8.6M
Northwestern Genomic Risk Assessment and Management ProgramU01HG011169 · NHGRI · NORTHWESTERN UNIVERSITY AT CHICAGO · PI REX L CHISHOLM, Elizabeth M McNally · 2020 to 2026
$7.4M
The Electronic Medical Records and Genomics (eMERGE) Network Phase III Coordinating Center (U01)U01HG008701 · NHGRI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI PETERSON, JOSEPH F. · 2015 to 2019
$7.1M
VGER, the Vanderbilt Genome-Electronic Records ProjectU01HG008672 · NHGRI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI DENNY, JOSHUA C., RODEN, DAN M · 2015 to 2019
$5.1M
The Future of Genomics Medicine in Patient Care: Contributions from CHOPU01HG008684 · NHGRI · CHILDREN'S HOSP OF PHILADELPHIA · PI HAKONARSON, HAKON · 2015 to 2019
$5.0M
OMOP information model for eMERGE phenotypingU01HG008679 · NHGRI · GEISINGER CLINIC · PI WILLIAMS, MARC S. · 2015 to 2019
$4.4M
NCATS NIH HHS UL1 TR002541NHGRI NIH HHS U01 HG006379NHGRI NIH HHS U01HG006379NHGRI NIH HHS U01 HG006388NHGRI NIH HHS U01HG008657NHGRI NIH HHS U01HG008664NHGRI NIH HHS U01 HG008666NHGRI NIH HHS U01HG008666NHGRI NIH HHS U01 HG008672NHGRI NIH HHS U01HG008672NHGRI NIH HHS U01 HG008673NHGRI NIH HHS U01HG008676NHGRI NIH HHS U01HG008679NHGRI NIH HHS U01HG008680NHGRI NIH HHS U01HG008684NHGRI NIH HHS U01HG008685NHGRI NIH HHS U01HG008701NHGRI NIH HHS U01 HG011169NHGRI NIH HHS U54MD007593-10
6 · The paper itself

Abstract

A goal of the 3rd phase of the Electronic Medical Records and Genomics (eMERGE3) Network was to examine the return of results (RoR) of actionable variants in more than 100 genes to consenting participants and their healthcare providers. Each of the 10 eMERGE sites developed plans for three essential elements of the RoR process: Disclosure to the participant, notification of the health care provider, and integration of results into the electronic health record (EHR). Procedures and protocols around these three elements were adapted as appropriate to individual site requirements and limitations. Detailed information about the RoR procedures at each site was obtained through structured telephone interviews and follow-up surveys with the clinical investigator leading or participating in the RoR process at each eMERGE3 institution. Because RoR processes at each of the 10 sites allowed for taking into account differences in population, disease focus and institutional requirements, significant heterogeneity of process was identified, including variability in the order in which patients and clinicians were notified and results were placed in the EHR. This heterogeneity in the process flow for eMERGE3 RoR reflects the "real world" of genomic medicine in which RoR procedures must be shaped by the needs of the patients and institutional environments.

Indexed as

electronic health recordgenetic testinggenomic medicinereturn of results

Identifiers

PMID32349224
PMCPMC7354592
OpenAlexW3019180361

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

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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.