Population Neuroscience: Strategies to Promote Data Sharing While Protecting Privacy

Curr Top Behav Neurosci. 2024 Mar 21. doi: 10.1007/7854_2024_467. Online ahead of print.

Abstract

Population neuroscience aims to advance our understanding of how genetic and environmental factors influence brain development and brain health over the life span, by integrating genomics, epidemiology, and neuroscience at population scale. This big data approach depends on data sharing strategies at both the micro- and macro-level, as well as attention to effective data management and protection of participant privacy. At the micro-level, researchers participate in international consortia that support collaboration, standards, and data sharing. They also seek to link together cohort studies, administrative health databases, and measures of the physical, built, and social environment in creative ways. Large-scale, longitudinal, and multi-modal cohorts are being designed to support explorations of genetic and environmental impacts on the brain. At a macro-level, funding agency policies now require data across health research domains to be managed according to the FAIR (findable, accessible, interoperable, and re-useable) Data principles and made available to the research community in a timely manner to support reproducibility and re-use. Data repositories provide technical infrastructure for storing, accessing, and increasingly also analyzing rich population-level data. Federated and cloud-based approaches are being leveraged to improve the security, remote accessibility, and performance of repositories. Finally, legal frameworks are being developed to facilitate secure health data access, integration, and analysis, providing new opportunities for the field.

Keywords: Data linkage; Data protection; Data sharing; FAIR; Population neuroscience; Privacy.