What is it about?
This article proposes a bill of right for research participants to receive their individual results, collected in the course of research. A framework for disclosure of individual results is shared, with examples from current Alzheimer's disease studies. Researchers are asked to plan studies prospectively to provide the option of learning individual research results.
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Why is it important?
This paper is unique in that the Bill of Rights was written by research participants, who are also co-authors on the paper. It also discusses ethical implications of sharing results, and includes perspectives of researchers designing current Alzheimer's disease studies. The paper also references tools that can be used immediately to implement the Bill of Rights, towards the aim of more inclusive research studies.
Perspectives
Research is strengthened by including participants in every stage of the process, from study design, conduct, to the dissemination of results. This paper is an example of where participants share what is important to them, giving researchers the opportunity to design studies that provide participants with the information they desire, while answering important scientific questions.
Sarah Walter
University of Southern California
Read the Original
This page is a summary of: Disclosing Individual Results in Dementia Research: A Proposed Study Participant’s Bill of Rights, Journal of Alzheimer s Disease, November 2022, IOS Press,
DOI: 10.3233/jad-220810.
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