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Clinical and Research Reports
Published Online: 16 July 2020

Presymptomatic Testing and Confidentiality in the Age of the Electronic Medical Record

Kevin J. Black, M.D., F.A.N.P.A. [email protected], Stacey K. Barton, M.S.W., L.C.S.W., and Joel S. Perlmutter, M.D.Authors Info & Affiliations
Publication: The Journal of Neuropsychiatry and Clinical Neurosciences
Volume 33, Number 1
https://doi.org/10.1176/appi.neuropsych.20030068
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Abstract

Objective:

Recent introduction of a commercial electronic medical record (EMR) system at the authors’ institution raised a number of questions about documenting visits for presymptomatic testing for Huntington’s disease (HD). Specifically, adoption of the EMR potentially compromised patient confidentiality and the personal delivery of test results, both of which are strongly recommended by professional consensus and lay organizations.

Methods:

The authors surveyed peer institutions about their experience with EMR systems in the setting of presymptomatic testing for HD.

Results:

Answers from 10 well-known HD specialty centers demonstrated a wide variety of approaches to managing these concerns. The responses did not clarify how to resolve the collision between the virtues of a shared medical record and the goal of patient control of sensitive medical information.

Conclusions:

These results demonstrate that important issues remain unresolved. The authors propose that medical record systems must adapt to and respect the patient’s desires for confidentiality and allow people undergoing presymptomatic testing to restrict access to this sensitive information.

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Information & Authors

Information

Published In

Go to The Journal of Neuropsychiatry and Clinical Neurosciences
Go to The Journal of Neuropsychiatry and Clinical Neurosciences
The Journal of Neuropsychiatry and Clinical Neurosciences
Volume 33 • Number 1 • Winter 2021
Pages: 80 - 83
PubMed: 32669021

History

Received: 17 April 2020
Accepted: 5 June 2020
Published online: 16 July 2020
Published in print: Winter 2021

Keywords

  1. Access to Information
  2. Clinical Laboratory Services
  3. Privacy
  4. Genetic Testing
  5. Huntington’s Disease
  6. Electronic Medical Record

Authors

Details

Kevin J. Black, M.D., F.A.N.P.A. [email protected]
Departments of Psychiatry (Black), Neurology (Black, Barton, Perlmutter), Radiology (Black, Perlmutter), and Neuroscience (Black, Perlmutter), and Programs in Physical Therapy and Occupational Therapy (Perlmutter), Washington University School of Medicine, St. Louis.
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Stacey K. Barton, M.S.W., L.C.S.W.
Departments of Psychiatry (Black), Neurology (Black, Barton, Perlmutter), Radiology (Black, Perlmutter), and Neuroscience (Black, Perlmutter), and Programs in Physical Therapy and Occupational Therapy (Perlmutter), Washington University School of Medicine, St. Louis.
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Joel S. Perlmutter, M.D.
Departments of Psychiatry (Black), Neurology (Black, Barton, Perlmutter), Radiology (Black, Perlmutter), and Neuroscience (Black, Perlmutter), and Programs in Physical Therapy and Occupational Therapy (Perlmutter), Washington University School of Medicine, St. Louis.
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Notes

Send correspondence to Dr. Black ([email protected]).

Competing Interests

Dr. Black has served as a consultant to Acadia Pharmaceuticals; he has received research grant support from Acadia Pharmaceuticals, Emalex Biosciences, and Neurocrine Biosciences; and he has served on the speaker’s bureaus of Acadia Pharmaceuticals and Teva Pharmaceuticals. The other authors report no financial relationships with commercial interests.

Funding Information

CHDI Foundationhttp://dx.doi.org/10.13039/100005725:
American Parkinson Disease Association (APDA) Center for Advanced PD Research at Washington University:
Greater St. Louis Chapter of the APDA:
The Barnes-Jewish Hospital Foundation: Elliot Stein Family Fund, Parkinson Disease Research Fund
Huntington's Disease Society of Americahttp://dx.doi.org/10.13039/100000887:
The HDSA Center of Excellence at Washington University in St. Louis:
Supported in part by the American Parkinson Disease Association (APDA) Center for Advanced Parkinson Disease Research at Washington University School of Medicine, the Barnes-Jewish Hospital Foundation (Elliot Stein Family Fund and Parkinson Disease Research Fund), the Cure Huntington’s Disease Initiative Foundation, the Greater St. Louis Chapter of the APDA, the Huntington’s Disease Society of America (HDSA), and the HDSA Center of Excellence at Washington University in St. Louis.The funders had no role in the study design, data collection, analysis, or decision to publish this article.

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