Creating an Unprotected Class: Addressing Legal Risks in the Era of Biologically-Defined Alzheimer’s Disease

Abstract

Background:

Documentation of preclinical biomarker tests for Alzheimer’s disease (AD) in the medical record may expose patients to employment and insurance discrimination risks. There is a gap in research describing clinicians’ approaches to documenting biomarker results.

Objective:

To evaluate discrimination risks faced by patients undergoing biomarker testing for AD through a qualitative analysis of clinician documentation practices.

Methods:

Semi-structured interviews using hypothetical patient scenarios. The qualitative analysis focused on interviewees’ responses related to documentation and disclosure of results.

Results:

We collected and analyzed 17 interviews with dementia experts; and identified three approaches to documenting biomarkers as: an association with active AD, noninformative, and an increased susceptibility for AD. Those who associated biomarkers with active disease were more likely to favor disclosure to employers and insurers, which could increase discrimination risks.

Conclusions:

This study demonstrates the variety of documentation and disclosure practices likely to emerge for preclinical AD biomarker tests and highlights a need for guidelines in this area.