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

Alzheimers Dement. 2022 Oct;18(10):1969-1979. doi: 10.1002/alz.12620. Epub 2022 Feb 25.

Abstract

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.

Keywords: biomarkers; disclosure; ethics and policy; preclinical Alzheimer's disease.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Alzheimer Disease* / diagnosis
  • Alzheimer Disease* / psychology
  • Alzheimer Disease* / therapy
  • Biomarkers
  • Cognitive Dysfunction* / psychology
  • Disclosure
  • Humans

Substances

  • Biomarkers