Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing

Alzheimer's disease (AD) begins with an asymptomatic preclinical phase, in which abnormal biomarkers indicate risk for developing cognitive impairment. Biomarker information is increasingly being disclosed in research settings, and is moving toward clinical settings with the development of cheaper and non-invasive testing. Limited research has focused on the safety and psychological effects of disclosing biomarker results to cognitively unimpaired adults. However, less is known about how to ensure equitable access and robust counseling for decision-making before testing, and how to effectively provide long-term follow-up and risk management after testing. Using the framework of Huntington's disease, which is based on extensive experience with disclosing and managing risk for a progressive neurodegenerative condition, this article proposes a conceptual model of pre-disclosure, disclosure, and post-disclosure phases for AD biomarker testing. Addressing research questions in each phase will facilitate the transition of biomarker testing into clinical practice.

Automated summary

This article discusses the safety and psychological effects of AD biomarker testing, as well as the counseling and risk management before and after testing. It proposes a conceptual model to guide the different phases of testing.