Leading by example: How the Webster team's systematic review quietly rebuked the field's preoccupation with biomarker “disclosure,” and why it matters

In this issue, Webster and colleagues report findings and provide direction following a systematic review and evidence synthesis designed to understand the decisional needs of research participants considering whether to receive biomarker or genetic risk information. The report serves as a foundation for a future of participant-centered approaches to the return of individual results in Alzheimer's disease research. This Ethics Response comments on the authors' terminology choices highlighting the notable absence of references to disclosure. The Response concludes that alternative terms like return or sharing of results offer less stigmatizing and more patient-centered approaches to communicating biomarker and genetic test results.

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Publication Details

Journal
Journal of Alzheimer s Disease
Published
2026-02-13
DOI
https://doi.org/10.1177/13872877251412917
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
0.00

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article

Leading by example: How the Webster team's systematic review quietly rebuked the field's preoccupation with biomarker “disclosure,” and why it matters

Jennifer H. Lingler
Journal of Alzheimer s Disease
Ethics in Clinical Research
article

Leading by example: How the Webster team's systematic review quietly rebuked the field's preoccupation with biomarker “disclosure,” and why it matters

Jennifer H. Lingler
article en

Abstract

In this issue, Webster and colleagues report findings and provide direction following a systematic review and evidence synthesis designed to understand the decisional needs of research participants considering whether to receive biomarker or genetic risk information. The report serves as a foundation for a future of participant-centered approaches to the return of individual results in Alzheimer's disease research. This Ethics Response comments on the authors' terminology choices highlighting the notable absence of references to disclosure. The Response concludes that alternative terms like return or sharing of results offer less stigmatizing and more patient-centered approaches to communicating biomarker and genetic test results.

Journal of Alzheimer s DiseaseVol. 110(1)
UC Davis Health (US)
National Institutes of Health
Peace, Justice and strong institutions
Openalex Percentile: Top 58%
Ethics in Clinical Research
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