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.
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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