Ethical, legal, and social implications of incorporating genomic information into electronic health records

被引：64

作者：

Hazin, Ribhi ^{[1
]}

Brothers, Kyle B. ^{[2
,3
]}

Malin, Bradley A. ^{[4
,5
,6
]}

Koenig, Barbara A. ^{[7
,8
]}

Sanderson, Saskia C. ^{[9
]}

Rothstein, Mark A. ^{[3
]}

Williams, Marc S. ^{[10
]}

Clayton, Ellen W. ^{[6
]}

Kullo, Iftikhar J. ^{[11
]}

机构：

[1] Wayne State Univ, Sch Med, Dept Internal Med, Detroit, MI 48201 USA

[2] Univ Louisville, Sch Med, Dept Pediat, Louisville, KY 40292 USA

[3] Univ Louisville, Sch Med, Inst Bioeth Hlth Policy & Law, Louisville, KY 40292 USA

[4] Vanderbilt Univ, Sch Med, Dept Biomed Informat, Nashville, TN 37212 USA

[5] Vanderbilt Univ, Dept Elect Engn & Comp Sci, Sch Engn, Nashville, TN 37235 USA

[6] Vanderbilt Univ, Ctr Biomed Eth & Soc, Nashville, TN 37235 USA

[7] Univ Calif San Francisco, Dept Social & Behav Sci, Inst Hlth & Aging, San Francisco, CA USA

[8] Univ Calif San Francisco, Dept Anthropol Hist & Social Med, San Francisco, CA 94143 USA

[9] Icahn Sch Med Mt Sinai, Charles Bronfman Inst Personalized Med, New York, NY USA

[10] Geisinger Hlth Syst, Genom Med Inst, Danville, PA USA

[11] Mayo Clin, Div Cardiovasc Dis, Rochester, MN 55905 USA

来源：

GENETICS IN MEDICINE | 2013年 / 15卷 / 10期

关键词：

clinical decision support; electronic health records; ethical; legal; and social implications; genomics; personalized medicine; GENETIC INFORMATION; CHEMOTHERAPY RESPONSE; PERSONALIZED MEDICINE; INCIDENTAL FINDINGS; CARE; RETURN; FUTURE; INTEGRATION; DUTY; IMPLEMENTATION;

D O I：

10.1038/gim.2013.117

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

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.

引用

页码：810 / 816

页数：7

共 75 条

[1] Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act
Allain, Dawn C.
Friedman, Sue
Senter, Leigha
[J]. FAMILIAL CANCER, 2012, 11 (04) : 637 - 644
[2] Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing
Allyse, Megan
Michie, Marsha
[J]. TRENDS IN BIOTECHNOLOGY, 2013, 31 (08) : 439 - 441
[3] [Anonymous], ETH LEG SOC IMPL
[4] Standard practices for computerized clinical decision support in community hospitals: a national survey
Ash, Joan S.
McCormack, James L.
Sittig, Dean F.
Wright, Adam
McMullen, Carmit
Bates, David W.
[J]. JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION, 2012, 19 (06) : 980 - 987
[5] An informatics approach to analyzing the incidentalome
Berg, Jonathan S.
Adams, Michael
Nassar, Nassib
Bizon, Chris
Lee, Kristy
Schmitt, Charles P.
Wilhelmsen, Kirk C.
Evans, James P.
[J]. GENETICS IN MEDICINE, 2013, 15 (01) : 36 - 44
[6] Opportunities and challenges for the integration of massively parallel genomic sequencing into clinical practice: lessons from the ClinSeq project
Biesecker, Leslie G.
[J]. GENETICS IN MEDICINE, 2012, 14 (04) : 393 - 398
[7] Health Information Technology in the Era of Care Delivery Reform To What End?
Bitton, Asaf
Flier, Lydia A.
Jha, Ashish K.
[J]. JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2012, 307 (24): : 2593 - 2594
[8] Using statistical and machine learning to help institutions detect suspicious access to electronic health records
Boxwala, Aziz A.
Kim, Jihoon
Grillo, Janice M.
Ohno-Machado, Lucila
[J]. JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION, 2011, 18 (04) : 498 - 505
[9] Adverse Events in Cancer Genetic Testing Medical, Ethical, Legal, and Financial Implications
Brierley, Karina L.
Blouch, Erica
Cogswell, Whitney
Homer, Jeanne P.
Pencarinha, Debbie
Stanislaw, Christine L.
Matloff, Ellen T.
[J]. CANCER JOURNAL, 2012, 18 (04) : 303 - 309
[10] Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues
Bunnik, Eline M.
Schermer, Maartje H. N.
Janssens, A. Cecile J. W.
[J]. BMC MEDICAL ETHICS, 2011, 12

← 1 2 3 4 5 6 7 8 →