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

Kevin J Black 1, Stacey K Barton 1, Joel S Perlmutter 1

Affiliations

PMID: 32669021
DOI: 10.1176/appi.neuropsych.20030068

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.

Keywords: Access to Information; Clinical Laboratory Services; Electronic Medical Record; Genetic Testing; Huntington’s Disease; Privacy.