Peer-Reviewed Publication
Am J Hum Genet2026;113(6):1159-1167.June 4, 2026Journal Article
Navigating data sharing in research.
Anna C F Lewis1, Ellen W Clayton2, Hana Bangash3, Harris T Bland4, Katherine E Bonini5, James J Cimino6, John J Connolly7, Robert R Freimuth8, Stephanie M Fullerton9, Hakon Hakonarson7, Ingrid A Holm10, Gail P Jarvik11, Atlas Khan12, Krzysztof Kiryluk12, Jodell E Linder13, Yuan Luo14, John A Lynch15, Kathleen F Mittendorf16, Jennifer A Pacheco17, Luke V Rasmussen14, Susannah L Rose18, Robb Rowley19, Richard R Sharp20, Theresa L Walunas21, Wei-Qi Wei4, Chunhua Weng22, Maya Sabatello23
1Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA; Harvard Medical School, Boston, MA, USA.
2Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN, USA.
3Department of Cardiovascular Medicine, Mayo Clinic, Rochester, MN, USA.
4Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, USA.
5Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
6Biomedical Informatics and Data Science, Heersink School of Medicine at the University of Alabama-Birmingham, Birmingham, AL, USA.
7Center for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
8Department of Artificial Intelligence and Informatics, Mayo Clinic, Rochester, MN, USA.
9Department of Bioethics & Humanities, University of Washington School of Medicine, Seattle, WA, USA.
10Harvard Medical School, Boston, MA, USA; Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA.
11Department of Medicine, University of Washington Medical Center, Seattle, WA, USA.
12Department of Medicine, Columbia University Irving Medical Center, New York, NY, USA.
13Vanderbilt Institute of Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA.
14Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
15School of Communication, Film, and Media Studies, University of Cincinnati, Cincinnati, OH, USA.
16Division of Hematology/Oncology, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
17Center for Biomedical Informatics and Biostatistics, University of Arizona, Tucson, AZ, USA.
18Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN, USA; Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, USA.
19General Internal Medicine, Mayo Clinic, Rochester, MN, USA.
20Biomedical Ethics Program, Mayo Clinic, Rochester, MN, USA.
21Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
22Department of Biomedical Informatics, Columbia University, New York, NY, USA.
23Department of Medicine, Columbia University Irving Medical Center, New York, NY, USA; Department of Medical Humanities and Ethics, Columbia University Irving Medical Center, New York, NY, USA. Electronic address: ms4075@cumc.columbia.edu.
Abstract
Sharing biomedical research data can accelerate scientific discovery, leading funders and journals to increasingly mandate sharing. However, data openness must be balanced with protecting research participants from harm in an evolving legal and social landscape. Drawing on experiences from the Electronic Medical Records and Genomics (eMERGE-IV) Network-a US-based, multi-site consortium gathering g…
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