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Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know

Disclosure of personal disease‐related information to asymptomatic adults has been debated over the last century in medicine and research. Recently, Alzheimer's disease (AD) has been conceptualized as a continuum that begins with a “preclinical” stage in which biomarkers are present in the abse...

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Autores principales: Erickson, Claire M., Chin, Nathaniel A., Johnson, Sterling C., Gleason, Carey E., Clark, Lindsay R.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7896633/
https://www.ncbi.nlm.nih.gov/pubmed/33665341
http://dx.doi.org/10.1002/dad2.12150
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author Erickson, Claire M.
Chin, Nathaniel A.
Johnson, Sterling C.
Gleason, Carey E.
Clark, Lindsay R.
author_facet Erickson, Claire M.
Chin, Nathaniel A.
Johnson, Sterling C.
Gleason, Carey E.
Clark, Lindsay R.
author_sort Erickson, Claire M.
collection PubMed
description Disclosure of personal disease‐related information to asymptomatic adults has been debated over the last century in medicine and research. Recently, Alzheimer's disease (AD) has been conceptualized as a continuum that begins with a “preclinical” stage in which biomarkers are present in the absence of cognitive impairment. Studies have begun assessing the safety, psychological, and behavioral effects of disclosing both AD‐related genetic and biomarker information to cognitively unimpaired older adults. Yet, debate continues over the appropriate circumstances and methods for returning such information. This article outlines concerns with and rationale for AD biomarker disclosure and summarizes findings from prior studies. Overall, this article aims to describe and respond to key questions concerning disclosure of amyloid positron emission tomography scan results to asymptomatic adults in a research setting. Moving forward, such conditions are important to consider as interventions target the preclinical phase of AD and normalize disclosing biomarker information to cognitively unimpaired persons.
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spelling pubmed-78966332021-03-03 Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know Erickson, Claire M. Chin, Nathaniel A. Johnson, Sterling C. Gleason, Carey E. Clark, Lindsay R. Alzheimers Dement (Amst) Diagnostic Assessment & Prognosis Disclosure of personal disease‐related information to asymptomatic adults has been debated over the last century in medicine and research. Recently, Alzheimer's disease (AD) has been conceptualized as a continuum that begins with a “preclinical” stage in which biomarkers are present in the absence of cognitive impairment. Studies have begun assessing the safety, psychological, and behavioral effects of disclosing both AD‐related genetic and biomarker information to cognitively unimpaired older adults. Yet, debate continues over the appropriate circumstances and methods for returning such information. This article outlines concerns with and rationale for AD biomarker disclosure and summarizes findings from prior studies. Overall, this article aims to describe and respond to key questions concerning disclosure of amyloid positron emission tomography scan results to asymptomatic adults in a research setting. Moving forward, such conditions are important to consider as interventions target the preclinical phase of AD and normalize disclosing biomarker information to cognitively unimpaired persons. John Wiley and Sons Inc. 2021-02-20 /pmc/articles/PMC7896633/ /pubmed/33665341 http://dx.doi.org/10.1002/dad2.12150 Text en © 2021 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Diagnostic Assessment & Prognosis
Erickson, Claire M.
Chin, Nathaniel A.
Johnson, Sterling C.
Gleason, Carey E.
Clark, Lindsay R.
Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know
title Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know
title_full Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know
title_fullStr Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know
title_full_unstemmed Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know
title_short Disclosure of preclinical Alzheimer's disease biomarker results in research and clinical settings: Why, how, and what we still need to know
title_sort disclosure of preclinical alzheimer's disease biomarker results in research and clinical settings: why, how, and what we still need to know
topic Diagnostic Assessment & Prognosis
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7896633/
https://www.ncbi.nlm.nih.gov/pubmed/33665341
http://dx.doi.org/10.1002/dad2.12150
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