Back to Search Start Over

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

Authors :
Christin Hoell
Maddalena Marasa
Noralane M. Lindor
Richard R. Sharp
Nora B. Henrikson
Sarah T. Bland
Janet L. Williams
Cynthia A. Prows
James D. Ralston
Hila Milo Rasouly
Sharon Aufox
Alanna Kulchak Rahm
Eric B. Larson
Ellen Wright Clayton
Paul S. Appelbaum
Josh F. Peterson
Carrie L. Blout
Sara L. Van Driest
Ingrid A. Holm
Philip E. Lammers
Wendy K. Chung
Maureen E. Smith
Robert C. Green
Iftikhar J. Kullo
Gail P. Jarvik
Marc S. Williams
Kurt D. Christensen
Margaret H. Harr
Julia Wynn
Georgia L. Wiesner
Kathleen A. Leppig
Melanie F. Myers
Source :
Journal of Personalized Medicine, Volume 10, Issue 2, Journal of Personalized Medicine, Vol 10, Iss 30, p 30 (2020)
Publication Year :
2020
Publisher :
MDPI AG, 2020.

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 &ldquo<br />real world&rdquo<br />of genomic medicine in which RoR procedures must be shaped by the needs of the patients and institutional environments.

Details

ISSN :
20754426
Volume :
10
Database :
OpenAIRE
Journal :
Journal of Personalized Medicine
Accession number :
edsair.doi.dedup.....85ac9b3f14893814bfcc26fe7e7d87cc
Full Text :
https://doi.org/10.3390/jpm10020030