Equitable data sharing in epidemics and pandemics

Journal article

Pratt, Bridget and Bull, Susan. (2021). Equitable data sharing in epidemics and pandemics. BMC Medical Ethics. 22(1), p. Article 136. https://doi.org/10.1186/s12910-021-00701-8
AuthorsPratt, Bridget and Bull, Susan
Abstract

Background
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. 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?

Methods
To 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.

Results
We 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.

Conclusions
This 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.

Keywordsethics; data sharing; COVID-19; pandemic; epidemic; utility; equity
Year2021
JournalBMC Medical Ethics
Journal citation22 (1), p. Article 136
PublisherBioMed Central
ISSN1472-6939
Digital Object Identifier (DOI)https://doi.org/10.1186/s12910-021-00701-8
PubMed ID34615519
Scopus EID2-s2.0-85116423135
PubMed Central IDPMC8493940
Open accessPublished as ‘gold’ (paid) open access
Research or scholarlyResearch
Page range1-14
Publisher's version
License
File Access Level
Open
Output statusPublished
Publication dates
Online06 Oct 2021
Publication process dates
Accepted08 Sep 2021
Deposited02 Jun 2022
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