Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience

Detalhes bibliográficos
Autor(a) principal: Almeida, Bethânia de Araújo
Data de Publicação: 2024
Outros Autores: Barreto, Mauricio L., Fonseca, Adalton dos Anjos, Pita, Robespierre Dantas da Rocha
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Institucional da FIOCRUZ (ARCA)
DOI: 10.23889/ijpds.v9i5.2934
Texto Completo: https://arca.fiocruz.br/handle/icict/67151
Resumo: Fundação Oswaldo Cruz. Instituto Gonçalo Moniz. Centro de Integração de Dados e Conhecimento para a Saúde. Salvador, BA, Brasil.
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spelling Almeida, Bethânia de AraújoBarreto, Mauricio L.Fonseca, Adalton dos AnjosPita, Robespierre Dantas da Rocha2024-11-19T12:56:04Z2024-11-19T12:56:04Z2024ALMEIDA, Bethânia de Araújo et al. Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience. International Journal of Population Data Science, v. 9, n. 5, p. 1, 2024.2399-4908https://arca.fiocruz.br/handle/icict/6715110.23889/ijpds.v9i5.2934engSwansea UniversityCiência de DadosConhecimentoEconomiaGovernança em SaúdePopulaçãoÉticaData ScienceEconomicsEthicsHealth GovernanceKnowledgePopulationCiência de DadosConhecimentoEconomiaGovernança em SaúdePopulaçãoÉticaEthics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experienceinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleFundação Oswaldo Cruz. Instituto Gonçalo Moniz. Centro de Integração de Dados e Conhecimento para a Saúde. Salvador, BA, Brasil.Fundação Oswaldo Cruz. Instituto Gonçalo Moniz. Centro de Integração de Dados e Conhecimento para a Saúde. Salvador, BA, Brasil.Fundação Oswaldo Cruz. Instituto Gonçalo Moniz. Salvador, BA, Brasil.Universidade Federal da Bahia. Instituto de Computação. Salvador, BA, Brasil.Objectives: To 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. Approach: Presentation 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. Results:The production of scientific knowledge supported by linked data, in addition to ethical and legal adherence to regulations, must consider social dimensions which pose new questions and contextualized solutions considering the rights of data subjects in groups and communities to implement strategies to promote dialogue and involvement with society, particularly with groups covered by linked data, as well as other data stakeholders, e.g. data regulators, data managers, policymakers and data users. Conclusions: From CIDACS' perspective, the workshop discussed how the main topics regarding populational data science, notably infrastructure, data linkage methods, ethical, legal and social implications, are intertwined and context-dependent. Furthermore, it promoted a comprehensive debate surrounding data practices and public engagement as a dynamic and cumulative process, a perspective which may contribute to similar initiatives in high-income countries.info:eu-repo/semantics/openAccessreponame:Repositório Institucional da FIOCRUZ (ARCA)instname:Fundação Oswaldo Cruz (FIOCRUZ)instacron:FIOCRUZORIGINALAlmeida, Bethânia de A. Ethics, Data Governance, Knowledge Production.pdfAlmeida, Bethânia de A. Ethics, Data Governance, Knowledge Production.pdfapplication/pdf193303https://arca.fiocruz.br/bitstreams/f61bcf34-c509-489e-b003-5ca9fbef9def/download25ea5bbcf8b61d52e67917c517838dbfMD52trueAnonymousREADLICENSElicense.txtlicense.txttext/plain; charset=utf-82991https://arca.fiocruz.br/bitstreams/4c68c12f-84ba-44aa-92db-ee32e63d601a/download5a560609d32a3863062d77ff32785d58MD51falseAnonymousREADTEXTAlmeida, Bethânia de A. Ethics, Data Governance, Knowledge Production.pdf.txtAlmeida, Bethânia de A. 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dc.title.none.fl_str_mv Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience
title Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience
spellingShingle Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience
Almeida, Bethânia de Araújo
Ciência de Dados
Conhecimento
Economia
Governança em Saúde
População
Ética
Data Science
Economics
Ethics
Health Governance
Knowledge
Population
Ciência de Dados
Conhecimento
Economia
Governança em Saúde
População
Ética
title_short Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience
title_full Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience
title_fullStr Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience
title_full_unstemmed Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience
title_sort Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience
author Almeida, Bethânia de Araújo
author_facet Almeida, Bethânia de Araújo
Barreto, Mauricio L.
Fonseca, Adalton dos Anjos
Pita, Robespierre Dantas da Rocha
author_role author
author2 Barreto, Mauricio L.
Fonseca, Adalton dos Anjos
Pita, Robespierre Dantas da Rocha
author2_role author
author
author
dc.contributor.author.fl_str_mv Almeida, Bethânia de Araújo
Barreto, Mauricio L.
Fonseca, Adalton dos Anjos
Pita, Robespierre Dantas da Rocha
dc.subject.other.none.fl_str_mv Ciência de Dados
Conhecimento
Economia
Governança em Saúde
População
Ética
topic Ciência de Dados
Conhecimento
Economia
Governança em Saúde
População
Ética
Data Science
Economics
Ethics
Health Governance
Knowledge
Population
Ciência de Dados
Conhecimento
Economia
Governança em Saúde
População
Ética
dc.subject.en.none.fl_str_mv Data Science
Economics
Ethics
Health Governance
Knowledge
Population
dc.subject.decs.none.fl_str_mv Ciência de Dados
Conhecimento
Economia
Governança em Saúde
População
Ética
description Fundação Oswaldo Cruz. Instituto Gonçalo Moniz. Centro de Integração de Dados e Conhecimento para a Saúde. Salvador, BA, Brasil.
publishDate 2024
dc.date.accessioned.fl_str_mv 2024-11-19T12:56:04Z
dc.date.available.fl_str_mv 2024-11-19T12:56:04Z
dc.date.issued.fl_str_mv 2024
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.citation.fl_str_mv ALMEIDA, Bethânia de Araújo et al. Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience. International Journal of Population Data Science, v. 9, n. 5, p. 1, 2024.
dc.identifier.uri.fl_str_mv https://arca.fiocruz.br/handle/icict/67151
dc.identifier.issn.none.fl_str_mv 2399-4908
dc.identifier.doi.none.fl_str_mv 10.23889/ijpds.v9i5.2934
identifier_str_mv ALMEIDA, Bethânia de Araújo et al. Ethics, data governance, knowledge production and public engagement in population data science field from the perspective of a brazilian experience. International Journal of Population Data Science, v. 9, n. 5, p. 1, 2024.
2399-4908
10.23889/ijpds.v9i5.2934
url https://arca.fiocruz.br/handle/icict/67151
dc.language.iso.fl_str_mv eng
language eng
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv Swansea University
publisher.none.fl_str_mv Swansea University
dc.source.none.fl_str_mv reponame:Repositório Institucional da FIOCRUZ (ARCA)
instname:Fundação Oswaldo Cruz (FIOCRUZ)
instacron:FIOCRUZ
instname_str Fundação Oswaldo Cruz (FIOCRUZ)
instacron_str FIOCRUZ
institution FIOCRUZ
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collection Repositório Institucional da FIOCRUZ (ARCA)
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