Your browser doesn't support javascript.
Equitable data sharing in epidemics and pandemics.
Pratt, Bridget; Bull, Susan.
  • Pratt B; Queensland Bioethics Centre, Australian Catholic University, 1100 Nudgee Rd., Brisbane, Australia. bridget.pratt@acu.edu.au.
  • Bull S; Centre for Health Equity, School of Population and Global Health, University of Melbourne, Melbourne, Australia. bridget.pratt@acu.edu.au.
BMC Med Ethics ; 22(1): 136, 2021 10 06.
Article in English | MEDLINE | ID: covidwho-2276948
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.
Subject(s)
Keywords

Full text: Available Collection: International databases Database: MEDLINE Main subject: Zika Virus / Zika Virus Infection / COVID-19 Type of study: Observational study / Reviews / Systematic review/Meta Analysis Limits: Humans Language: English Journal: BMC Med Ethics Journal subject: Ethics Year: 2021 Document Type: Article Affiliation country: S12910-021-00701-8

Similar

MEDLINE

...
LILACS

LIS


Full text: Available Collection: International databases Database: MEDLINE Main subject: Zika Virus / Zika Virus Infection / COVID-19 Type of study: Observational study / Reviews / Systematic review/Meta Analysis Limits: Humans Language: English Journal: BMC Med Ethics Journal subject: Ethics Year: 2021 Document Type: Article Affiliation country: S12910-021-00701-8