Ethical, Legal and Social Issues Surrounding Knowledge Production in Health Using Linked Data: A Brazilian Experience
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The Centre for Data and Knowledge Integration for Health (CIDACS)/ Oswaldo Cruz Foundation
Brazil -
The Centre for Data and Knowledge Integration for Health (CIDACS)/Oswaldo Cruz Foundation Brazil
Abstract
The use of data derived from Electronic Health Records and Real-World Data is central to epidemiological research, particularly in population health studies. Administrative data—information collected during routine citizen-government interactions or the delivery of services—are digitally structured, falling under the broader concept of ‘digital health’. Linking health data with social data holds immense potential for investigating social determinants of health. This article aims to elucidate the process of enabling the transformation of linked health and social data to support scientific research and knowledge production on social determinants of health within an epidemiological context, while focusing on relevant ethical, legal and sociotechnical issues (ELSI). The analysis is reflexive, grounded by a case study of a Brazilian initiative, the Centre for Data and Knowledge Integration for Health (CIDACS), which generates population health knowledge supported by large volumes of linked administrative data. Drawing on Science, Technology and Society (STS) Studies and Critical Data Studies, this article attempts to situate the knowledge produced by CIDACS, recognising that its data production, data infrastructure operations and data usage are intertwined and contextually embedded within sociohistorical and disciplinary frameworks. Our study concludes that concrete experiences of data practices reveal nuanced insights, underscoring the role of the Global South in advancing alternative and critical epistemologies.
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Author Biographies
BrazilMariana Pitta Lima is a postdoctoral research fellow at the Centre for Data and Knowledge Integration for Health (CIDACS/Fiocruz Bahia, Brazil). She holds a master’s degree and a PhD in Public Health with a focus on Social Sciences and Health from the Federal University of Bahia, Brazil. Her main research interests include the relationships between Data, Science and Society, with a particular focus on knowledge production for health; Data Sharing and Public Health Emergencies; and Critical Data Studies, especially in the context of the Global South. She is also a member of the Society for the Social Studies of Science (4S).
BrazilBethania Almeida is a civil servant at the Oswaldo Cruz Foundation (FIOCRUZ), researcher and vice coordinator at the Centre for Data and Knowledge Integration for Health (CIDACS/FIOCRUZ Bahia, Brazil). She holds a bachelor’s and a master’s degree in social science and a PhD in collective health from the Federal University of Bahia with a training period at the Science Policy Research Unit (University of Sussex). Her main areas of interest include Data Governance for Public Health Research; Interdisciplinary Research on Social and Environmental Determinants of Health; Ethical, Legal and Social Aspects related to Population Data Science, Human Genomics and Open Science.
