HMN 2026: How to examine ethical sharing of research data in Alzheimer’s and related dementias

Researchers from academia, federal agencies and national organizations, and participants enrolled in research studies focused on neurodegenerative diseases such as Alzheimer’s disease will gather at Georgia State University for a scientific retreat that seeks to advance ethical data and sample sharing practices to accelerate scientific advancements.

Hosted by Associate Professor Jalayne Arias in the School of Public Health, the workshop, which will be held on March 26 and 27, will explore challenges that have the potential to impede the sharing of critical research data. This year’s retreat is the first in a series of similar events at GSU. This year, attendees will explore issues of informed consent for data and sample sharing and of aligning participants’ values and expectations with data and sample sharing practices.

“Data and sample sharing are central to advancing detection, diagnosis and treatment of neurodegenerative diseases,” Arias said. “It is important that we align consenting practices with participants’ expectations regarding the use of their data and samples. This retreat will aim to generate new solutions toward best practices in neurodegenerative research and that facilitate data and sample sharing.”

Arias is leading two studies that include multi-institutional and interdisciplinary teams of researchers who are working to identify and evaluate barriers and facilitators to sharing research data in Alzheimer’s disease and related dementias. These project aims to develop recommendations and guidelines that support collaboration and accelerate the discovery of new treatments. This work has described data sharing practices in ADRD research, including drivers of data sharing behaviors and outcomes from data sharing requests. The work is published in the journal Alzheimer’s & Dementia.

Her preliminary research has identified several challenges, including the time required to prepare data for sharing—such as redacting personally identifiable information—and concerns that sharing data might hinder a researcher’s career by making it more difficult to publish their findings in a peer-reviewed journal or by giving other researchers a competitive advantage. The retreat will lay the foundation for future collaborations that support data and sample sharing efforts.

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