Abstract
BackgroundRapid data sharing can maximize the utility of data. In epidemics and pandemics like Zika, Ebola, and COVID-19, the case for such practices seems especially urgent and warranted. Yet rapidly sharing data widely has previously generated significant concerns related to equity. The continued lack of understanding and guidance on equitable data sharing raises the following questions: Should data sharing in epidemics and pandemics primarily advance utility, or should it advance equity as well? If so, what norms comprise equitable data sharing in epidemics and pandemics? Do these norms address the equity-related concerns raised by researchers, data providers, and other stakeholders? What tensions must be balanced between equity and other values?MethodsTo explore these questions, we undertook a systematic scoping review of the literature on data sharing in epidemics and pandemics and thematically analyzed identified literature for its discussion of ethical values, norms, concerns, and tensions, with a particular (but not exclusive) emphasis on equity. We wanted to both understand how equity in data sharing is being conceptualized and draw out other important values and norms for data sharing in epidemics and pandemics.ResultsWe found that values of utility, equity, solidarity, and reciprocity were described, and we report their associated norms, including researcher recognition; rapid, real-time sharing; capacity development; and fair benefits to data generators, data providers, and source countries. The value of utility and its associated norms were discussed substantially more than others. Tensions between utility norms (e.g., rapid, real-time sharing) and equity norms (e.g., researcher recognition, equitable access) were raised.ConclusionsThis study found support for equity being advanced by data sharing in epidemics and pandemics. However, norms for equitable data sharing in epidemics and pandemics require further development, particularly in relation to power sharing and participatory approaches prioritizing inclusion. Addressing structural inequities in the wider global health landscape is also needed to achieve equitable data sharing in epidemics and pandemics.
Highlights
Rapid data sharing can maximize the utility of data
We report on the types of healthrelated data considered important to share in epidemics and pandemics, values thought to be promoted by sharing such data, norms for sharing data that promote those values, equity-related concerns, and tensions between identified values
Results we report findings on the types of data considered important to share during epidemics and pandemics, the values thought to be promoted by data sharing in such contexts, norms for sharing data, equityrelated concerns, and tensions between identified values
Summary
Rapid data sharing can maximize the utility of data. In epidemics and pandemics like Zika, Ebola, and COVID-19, the case for such practices seems especially urgent and warranted. The importance of sharing data to address global health priorities, including informing responses to outbreaks and epidemics, is widely recognized [2]. Pratt and Bull BMC Med Ethics (2021) 22:136 been developed by key stakeholders, including national governments, global health NGOs, journals, research funders and research institutions. These mandates have been accompanied by significant developments in the policies and infrastructures required to support such sharing [3]. The rapid sharing of data as widely as possible is often recognized as key to maximizing data utility. Data sharing norms prioritizing utility have previously generated concerns related to equity. The disproportionate availability of resources for data analysis in wealthy institutions, for example, may result in researchers from high-income countries (HICs) being well equipped to make use of data shared from LMICs, while the reverse is less often true [7]
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