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Ethics, Data Governance, Knowledge Production and Public Engagement in Population Data Science Field from the Perspective of a Brazilian Experience

Bethânia De Araújo Almeida, Mauricio L. Barreto, Adalton Dos Anjos Fonseca, Robespierre Dantas Da Rocha Pita · International Journal of Population Data Science · 2024

ObjectivesTo present and discuss the experience and associated ethical, legal and sociotechnical challenges of creating the Center for Data and Knowledge Integration for Health (CIDACS/Fiocruz Bahia-Brazil), initially constructed to link socioeconomic and health data to make it possible to build the 100 Million Brazilians Cohort aimed to investigate the social inequalities in health and the impact of social protection policies on health in low-income and vulnerable populations throughout Brazil. ApproachPresentation of CIDACS’ interdisciplinary work focusing on the complexity of building an infrastructure and capacity to conduct record linkage with quality and accuracy and to provide access to deidentified linked datasets to support knowledge production. Based on an interactive discussion was possible exchanging experiences and insights about design and implementing strategies that enable ethical and inclusive data practices aligned with specific characteristics, challenges, and opportunities of Population Data Science in a broader and contextualized perspective. ResultsThe production of scientific knowledge supported by linked data, in addition to ethical and legal adherence to

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