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February 16, 2026Journal of Alzheimer s Disease0 citationsOpen Access

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

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JLJennifer H. Lingler

Key Points

  • To explore the decisional needs of research participants regarding biomarker and genetic information.
  • Conducted a systematic review and evidence synthesis
  • Evaluated participant needs for receiving genetic risk information
  • Analyzed terminology used in the context of biomarker communication
  • Highlighted the need for patient-centered approaches in disclosing biomarker results
  • Emphasized alternative terms like return or sharing of results
  • Rebuked the field's focus on the term disclosure as potentially stigmatizing.

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.

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Cite This Study

Jennifer H. Lingler (2026) studied this question.

synapsesocial.com/papers/6992652ceb1f82dc367a11a8https://doi.org/10.1177/13872877251412917
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