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Short abstract:

Considering scientific, technical and social issues concerning data sharing and stakeholders’ roles, the paper discusses data production and sharing during public health emergencies based on the case of the Zika epidemic.

Long abstract:

The purpose of this communication is to present the results of a scoping review within the project: Long-term consequences of Zika virus infections during pregnancy for school-aged children and their families in Brazil (LIFE Zika). Since a cluster of newborn microcephaly cases was noticed and related to vertical transmission of Zika virus infections during pregnancy, Brazil has experienced a range of repercussions of the Zika virus epidemic (ZIKV) particularly devastating consequences of Congenital Zika Syndrome for children (CZS) and their families. Zika virus was considered a Public Health Emergency of International Concern (PHEIC) from February to November 2016 by WHO, and CZS is a new disease with many knowledge gaps to inform clinical decision-making and public policies (e.g., prenatal screening, educational adaptations, and social protection), requiring data sharing for both scientists and health authorities. In this sense, our study aims to map and analyse how data sharing in the ZIKV epidemic, and Congenital Zika Syndrome have been approached in the scientific literature from 2015 to 2023. We consider international perspectives on data sharing in PHEIC and distinctive elements from low- and middle-income countries using the Zika epidemic in Brazil as a case study. Our categories of analysis were delineated considering scientific, technical and social issues concerning data sharing and stakeholders’ roles (academia, funders, multilateral organisations, governmental authorities, affected subjects, communities and countries).