Center for Medical Ethics and Health Policy Staff Publications

Language

English

Publication Date

4-1-2024

Journal

Alzheimer's & Dementia Journal

DOI

10.1002/alz.13719

PMID

38456576

PMCID

PMC11032535

PubMedCentral® Posted Date

3-8-2024

PubMedCentral® Full Text Version

Post-print

Abstract

Introduction: Federal policies and guidelines have expanded the return of individual results to participants and expectations for data sharing between investigators and through repositories. Here, we report investigators' and study participants' views and experiences with data stewardship practices within frontotemporal lobal degeneration (FTLD) research, which reveal unique ethical challenges.

Methods: Semi-structured interviews with (1) investigators conducting FTLD research that includes genetic data collection and/or analysis and (2) participants enrolled in a single site longitudinal FTLD study.

Results: Analysis of the interviews identified three meta themes: perspectives on data sharing, experiences with enrollment and participation, and data management and security as mechanisms for participant protections.

Discussion: This study identified a set of preliminary gaps and needs regarding data stewardship within FTLD research. The results offer initial insights on ethical challenges to data stewardship aimed at informing future guidelines and policies.

Keywords

Humans, Frontotemporal Lobar Degeneration, Atrophy, Research Personnel, data sharing, ethics, frontotemporal lobar degeneration, policy/law, research

Published Open-Access

yes

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