ATLANTA—Expectations for data sharing among scientists and returning research results to study subjects have evolved in recent years. A new study led by a Georgia State University researcher underscores potential barriers to sharing data related to a relatively rare form of dementia known as frontotemporal lobar degeneration (FTLD).
In a new study published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association, Associate Professor Jalayne Arias in the GSU School of Public Health examined the views of investigators who study FTLD as well as research participants.
The study found that researchers contend with a tension between making data widely available and protecting their career interests. Researchers also expressed concerns about protecting the privacy of study participants in the context of a rare disease with a strong genetic component.
Many study participants, Arias and her colleagues found, reported being motivated to enroll in a study to learn their genetic status. While they typically said they trust the research team, they reported varying levels of understanding of how their data could be shared.
“FTLD is a rare disease, so that heightens the value of data sharing for researchers,” Arias said. “From the perspective of a study participant, the strong genetic component of the disease can motivate them to enroll in a study, but it also has the potential to make them more identifiable.”
Arias and her colleagues conducted semi-structured interviews with 17 researchers and 17 participants for their study. The findings laid the foundation for broader study that is surveying 1,000 researchers nationwide who study Alzheimer’s disease and Alzheimer’s disease related dementias.
Their work comes on the heels of a 2023 National Institutes of Health Data Management and Sharing Policy that seeks to establish a foundation for equitable and effective sharing practices. Researchers are working to develop standards that are specific to their projects and institutions, Arias said, but consistency among data sharing practices is lacking.
“Investigators may in theory value and appreciate data sharing, but in practice there may be barriers to sharing data,” Arias said. “This study has helped unearth insights to help better understand barriers and the facilitators to data sharing.”
Research reported in this news release was supported by the Marcus Family Foundation and National Institutes of Health under award numbers NIH-NIA R01AG080093, R01AG062588, R01AG057234, P30AG062422, P01AG019724, U19AG079774, NIH-NINDS U54NS123985, and NIH-NIDA 75N95022C00031. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Story by Sam Fahmy
Featured Researcher
Jalayne Arias
Associate Professor
Health Policy & Behavioral Sciences
Jalayne Arias is an Associate Professor in Health Policy & Behavioral Sciences in the School of Public Health at Georgia State University. Prof. Arias' research focuses on the policy, legal, and ethical questions that arise in Alzheimer's disease and related dementias, aging, and neurosciences.