Genetic and biomarker disclosure process in a memory and aging study.
Inbal Mayan1,2, Heidi Roth3, Dhrubajyoti Ghosh4
1Duke Aging Center and Department of Medicine, Duke University School of Medicine, Durham, NC, USA.
Journal of Alzheimer'S Disease : JAD
|February 10, 2025
Summary
Disclosing Alzheimer's disease biomarker results to participants enhances ethical research partnerships. A new process showed high participant satisfaction and reduced anxiety, offering a template for standardized result delivery.
Area of Science:
- Neuroscience
- Genetics
- Medical Ethics
Background:
- Ethical principles support disclosing biomarker results to research participants.
- No standardized guidelines exist for Alzheimer's disease biomarker disclosure.
- Alzheimer's Disease Research Centers (ADRCs) need clear protocols.
Purpose of the Study:
- To develop and evaluate a process for delivering biomarker and genetic results to participants in Alzheimer's disease research.
- To assess participant satisfaction and anxiety levels post-disclosure.
- To create a template for standardized Alzheimer's biomarker result delivery.
Main Methods:
- Developed a process and tools for result delivery.
- Delivered biomarker and genetic results to 65 participants in The Memory and Aging Study.
- Analyzed survey responses from 46 participants.
Main Results:
- High participant satisfaction reported after receiving results.
- Lower anxiety levels observed in participants post-disclosure.
- The developed process was effective in delivering results.
Conclusions:
- A standardized process for Alzheimer's disease biomarker disclosure is feasible and beneficial.
- Participant-centered disclosure improves satisfaction and reduces anxiety.
- The developed template can guide future result delivery in ADRCs.
