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Implications of preclinical Alzheimer's disease biomarker disclosure for US policy and society

  • Claire M. Erickson
  • , Lindsay R. Clark
  • , Fred B. Ketchum
  • , Nathaniel A. Chin
  • , Carey E. Gleason
  • , Emily A. Largent

Research output: Contribution to journal › Article › peer-review

Abstract

Disclosure of Alzheimer's disease (AD) biomarkers to cognitively unimpaired adults are currently conducted only in research settings. Yet, US Food and Drug Administration approval of a disease-modifying treatment for symptomatic individuals, improved understanding of the “preclinical” phase of disease, and advancements toward more accessible biomarker tests suggest such disclosure will increase in frequency, eventually becoming routine in clinical practice. The changing landscape in AD research to focus on biomarkers has generated debate on the validity and clinical utility of disclosure to cognitively unimpaired adults. This article explores the broader social implications of more widespread AD biomarker disclosure—that is, of individuals learning their risk for developing dementia caused by AD. We identify 10 challenges and offer preliminary solutions. As the field continues to evolve, it is essential to anticipate and address these broader ethical, legal, and social implications of disclosure.

Original languageEnglish (US)
Article numbere12339
JournalAlzheimer's and Dementia: Diagnosis, Assessment and Disease Monitoring
Volume14
Issue number1
DOIs
StatePublished - 2022
Externally publishedYes

Bibliographical note

Publisher Copyright:
© 2022 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.

Keywords

  • Alzheimer's disease
  • biomarker
  • caregiver
  • ethics
  • law
  • preclinical

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