Ethical, legal, and social implications of incorporating genomic
information into electronic health records
Ribhi Hazin, MD
1
, Kyle B. Brothers, MD
2,3
, Bradley A. Malin, PhD
4,5,6
, Barbara A. Koenig,
PhD
7,8
, Saskia C. Sanderson, PhD
9
, Mark A. Rothstein, JD
3
, Marc S. Williams, MD
10
, Ellen
W. Clayton, JD, MD
11
, and Iftikhar J. Kullo, MD
12
1
Department of Internal Medicine, Wayne State University School of Medicine, Detroit, Michigan,
USA
2
Department of Pediatrics, University of Louisville School of Medicine, Louisville, Kentucky, USA
3
Institute for Bioethics, Health Policy, and Law, University of Louisville School of Medicine,
Louisville, Kentucky, USA
4
Department of Biomedical Informatics, School of Medicine, Vanderbilt University, Nashville,
Tennessee, USA
5
Department of Electrical Engineering and Computer Science, School of Engineering, Vanderbilt
University, Nashville, Tennessee, USA
6
Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tennessee, USA
7
Department of Social and Behavioral Sciences, Institute for Health and Aging, University of
California, San Francisco, San Francisco, California, USA
8
Department of Anthropology, History, and Social Medicine, University of California, San
Francisco, San Francisco, California, USA
9
Genetics and Genomic Sciences, The Charles Bronfman Institute for Personalized Medicine,
Icahn School of Medicine at Mount Sinai, New York, New York, USA
10
Genomic Medicine Institute, Geisinger Health System, Danville, Pennsylvania, USA
11
Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tennessee, USA
12
Division of Cardiovascular Diseases, Mayo Clinic, Rochester, Minnesota, USA.
Abstract
The inclusion of genomic data in the electronic health record raises important ethical, legal, and
social issues. In this article, we highlight these challenges and discuss potential solutions. We
provide a brief background on the current state of electronic health records in the context of
genomic medicine, discuss the importance of equitable access to genome-enabled electronic health
records, and consider the potential use of electronic health records for improving genomic literacy
in patients and providers. We highlight the importance of privacy, access, and security, and of
determining which genomic information is included in the electronic health record. Finally, we
discuss the challenges of reporting incidental findings, storing and reinterpreting genomic data,
and nondocumentation and duty to warn family members at potential genetic risk.
© American College of Medical Genetics and Genomics
Correspondence: Iftikhar J. Kullo (kullo.iftikhar@mayo.edu) or Ellen W. Clayton (ellen.clayton@vanderbilt.edu).
DISCLOSURE The authors declare no conflict of interest.
NIH Public Access
Author Manuscript
Genet Med. Author manuscript; available in PMC 2014 February 17.
Published in final edited form as:
Genet Med. 2013 October ; 15(10): 810–816. doi:10.1038/gim.2013.117.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript