Electronic medical records need to accommodate confidentiality for presymptomatic testing

What is it about?

Our institution recently mandated conversion to a commercial electronic medical record (EMR). EMRs can provide several benefits, but one unexpected consequence was that we could no longer promise people undergoing presymptomatic testing for Huntington disease (HD) the same confidentiality assurances as previously. Furthermore, the availability of a patient-facing web portal to test results potentially undermined the goal to reveal these results in a supportive, face-to-face setting, as recommended. We surveyed 10 American HD centers of excellence to determine how they responded to these problems. The answers reveal a variety of practices, none of which resolved the underlying issues.

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Why is it important?

People undergoing presymptomatic testing for HD face a different situation from most patients. Even though they may remain healthy for decades after the test, a positive test result could lead to inappropriate responses from physicians, employers or others. We argue that presymptomatic testing patients shouldn't have to surrender confidentiality, and should have these sensitive test results delivered in person. EMRs must provide alternative processes that support these recommended clinical practices.