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

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Vanderbilt Clinical and Translational Hereditary Cancer Program, Vanderbilt-Ingram Cancer Center, and Department of Medicine, Vanderbilt University Medical Center, Nashville, TN 37232, USA
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Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA
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Department of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, NY 10027, USA
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Department of Obstetrics and Gynecology, Feinberg School of Medicine, Northwestern University, Chicago, IL 60611, USA
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Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37232, USA
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Department of Medicine Brigham and Women’s Hospital and Harvard Medical School, Boston, MA 02115, USA
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Harvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MA 02115, USA
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Department of Pediatrics and Department of Medicine, Columbia University, New York, NY 10027, USA
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Center for Biomedical Ethics and Society and Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN 37232, USA
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Division of Genetics, Department of Medicine, Brigham and Women’s Hospital, Broad Institute of MIT and Harvard, Cambridge, MA 02142, USA
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Center for Applied Genomics, Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
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Kaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA
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Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA
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Division of Genetics and Genomics, Boston Children’s Hospital and Department of Pediatrics, Harvard Medical School, Boston, MA 02115, USA
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Departments of Medicine, Division of Medical Genetics and Genome Sciences, University of Washington, Seattle, WA 98195, USA
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Department of Cardiovascular Medicine, Mayo Clinic, Rochester, MN 55902, USA
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Department of Internal Medicine, Meharry Medical College, Nashville, TN 37208, USA
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Department of Health Sciences Research, Mayo Clinic Arizona, Scottsdale, AZ 85259, USA
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Department of Medicine, Division of Nephrology, Columbia University, New York, NY 10032, USA
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Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, College of Medicine, University of Cincinnati, Cincinnati, OH 45229, USA
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Department of Medicine and Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37232, USA
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Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH 45229, USA
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Biomedical Ethics Program, Mayo Clinic, Rochester, MN 55902, USA
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Department of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL 60611, USA
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Department of Pediatrics and Department of Medicine, Vanderbilt University Medical Center, Nashville, TN 37232, USA
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Department of Pediatrics, Columbia University, New York, NY 10027, USA
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Genetic Services and Kaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA
*
Author to whom correspondence should be addressed.
J. Pers. Med. 2020, 10(2), 30; https://doi.org/10.3390/jpm10020030
Received: 30 March 2020 / Revised: 20 April 2020 / Accepted: 21 April 2020 / Published: 27 April 2020
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. View Full-Text
Keywords: genomic medicine; genetic testing; return of results; electronic health record genomic medicine; genetic testing; return of results; electronic health record
MDPI and ACS Style

Wiesner, G.L.; Kulchak Rahm, A.; Appelbaum, P.; Aufox, S.; Bland, S.T.; Blout, C.L.; Christensen, K.D.; Chung, W.K.; Clayton, E.W.; Green, R.C.; Harr, M.H.; Henrikson, N.; Hoell, C.; Holm, I.A.; Jarvik, G.P.; Kullo, I.J.; Lammers, P.E.; Larson, E.B.; Lindor, N.M.; Marasa, M.; F. Myers, M.; Peterson, J.F.; Prows, C.A.; Ralston, J.D.; Milo Rasouly, H.; Sharp, R.R.; Smith, M.E.; Van Driest, S.L.; Williams, J.L.; Williams, M.S.; Wynn, J.; Leppig, K.A. Returning Results in the Genomic Era: Initial Experiences of the eMERGE Network. J. Pers. Med. 2020, 10, 30.

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