Literature DB >> 18580687

Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider.

Amy L McGuire1, Rebecca Fisher, Paul Cusenza, Kathy Hudson, Mark A Rothstein, Deven McGraw, Stephen Matteson, John Glaser, Douglas E Henley.   

Abstract

As clinical genetics evolves, and we embark down the path toward more personalized and effective health care, the amount, detail, and complexity of genetic/genomic test information within the electronic health record will increase. This information should be appropriately protected to secure the trust of patients and to support interoperable electronic health information exchange. This article discusses characteristics of genetic/genomic test information, including predictive capability, immutability, and uniqueness, which should be considered when developing policies about information protection. Issues related to "genetic exceptionalism"; i.e., whether genetic/genomic test information should be treated differently from other medical information for purposes of data access and permissible use, are also considered. These discussions can help guide policy that will facilitate the biological and clinical resource development to support the introduction of this information into health care.

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Year:  2008        PMID: 18580687     DOI: 10.1097/gim.0b013e31817a8aaa

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  31 in total

1.  Practical considerations to guide development of access controls and decision support for genetic information in electronic medical records.

Authors:  Diana C Darcy; Eleanor T Lewis; Kelly E Ormond; David J Clark; Jodie A Trafton
Journal:  BMC Health Serv Res       Date:  2011-11-02       Impact factor: 2.655

2.  Advances and current state of the security and privacy in electronic health records: survey from a social perspective.

Authors:  Antonio Tejero; Isabel de la Torre
Journal:  J Med Syst       Date:  2011-09-21       Impact factor: 4.460

Review 3.  Benefits and Risks of Sharing Genomic Information.

Authors:  Dhikshitha Balaji; Sharon F Terry
Journal:  Genet Test Mol Biomarkers       Date:  2015-11-20

4.  Generating Electronic Health Records with Multiple Data Types and Constraints.

Authors:  Chao Yan; Ziqi Zhang; Steve Nyemba; Bradley A Malin
Journal:  AMIA Annu Symp Proc       Date:  2021-01-25

5.  PRINCESS: Privacy-protecting Rare disease International Network Collaboration via Encryption through Software guard extensionS.

Authors:  Feng Chen; Shuang Wang; Xiaoqian Jiang; Sijie Ding; Yao Lu; Jihoon Kim; S Cenk Sahinalp; Chisato Shimizu; Jane C Burns; Victoria J Wright; Eileen Png; Martin L Hibberd; David D Lloyd; Hai Yang; Amalio Telenti; Cinnamon S Bloss; Dov Fox; Kristin Lauter; Lucila Ohno-Machado
Journal:  Bioinformatics       Date:  2017-03-15       Impact factor: 6.937

Review 6.  Identifiability in biobanks: models, measures, and mitigation strategies.

Authors:  Bradley Malin; Grigorios Loukides; Kathleen Benitez; Ellen Wright Clayton
Journal:  Hum Genet       Date:  2011-07-08       Impact factor: 4.132

7.  The disclosure of diagnosis codes can breach research participants' privacy.

Authors:  Grigorios Loukides; Joshua C Denny; Bradley Malin
Journal:  J Am Med Inform Assoc       Date:  2010 May-Jun       Impact factor: 4.497

8.  Attitudes toward genetic research review: results from a survey of human genetics researchers.

Authors:  K L Edwards; A A Lemke; S B Trinidad; S M Lewis; H Starks; M T Quinn Griffin; G L Wiesner
Journal:  Public Health Genomics       Date:  2011-04-11       Impact factor: 2.000

9.  Psychiatric Genetics in Child Custody Proceedings: Ethical, Legal, and Social Issues.

Authors:  Maya Sabatello; S Appelbaum
Journal:  Curr Genet Med Rep       Date:  2016-06-30

10.  How can psychological science inform research about genetic counseling for clinical genomic sequencing?

Authors:  Cynthia M Khan; Christine Rini; Barbara A Bernhardt; J Scott Roberts; Kurt D Christensen; James P Evans; Kyle B Brothers; Myra I Roche; Jonathan S Berg; Gail E Henderson
Journal:  J Genet Couns       Date:  2014-12-09       Impact factor: 2.537

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