Equitable data sharing in epidemics and pandemics.

Area of Science:

• Public Health
• Epidemiology
• Global Health Ethics

Background:

• Rapid data sharing is vital during epidemics and pandemics (e.g., Zika, Ebola, COVID-19) to maximize data utility.
• However, widespread data sharing has raised significant concerns regarding equity.
• There's a need to clarify whether data sharing should prioritize utility, equity, or both, and establish norms for equitable practices.

Purpose of the Study:

• To explore ethical values, norms, concerns, and tensions in epidemic and pandemic data sharing.
• To understand conceptualizations of equity in data sharing.
• To identify key values and norms for effective and equitable data sharing.

Main Methods:

• Systematic scoping review of literature on data sharing in epidemics and pandemics.
• Thematic analysis of identified literature focusing on ethical values, norms, concerns, and tensions, with an emphasis on equity.

Main Results:

• Identified values include utility, equity, solidarity, and reciprocity, with associated norms like researcher recognition, rapid sharing, capacity development, and fair benefits.
• Utility and its norms were discussed more frequently than other values.
• Tensions were noted between utility norms (e.g., rapid sharing) and equity norms (e.g., equitable access).

Conclusions:

• Data sharing in epidemics and pandemics can advance equity.
• Further development of equitable data sharing norms is required, focusing on power sharing, inclusivity, and participatory approaches.
• Addressing broader structural inequities in global health is essential for achieving equitable data sharing.