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Friday, May 10 • 4:30pm - 5:25pm
Legal Frameworks that Focus on an Open Science Policy for Sharing Health Research Data

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This session will present the results of the research "National Legal Frameworks in the Face of Data Opening for Health Research: personal, sensitive or sensitive data and intellectual property". It is divided into two parts. In the first, Paula Xavier dos Santos, coordinator of the Working Group on Open Science of the Oswaldo Cruz Foundation (GTCA-Fiocruz), will give a contextualization talk about the work of elaborating a Policy for Data Openness for Research for the Oswaldo Cruz Foundation, a century-old institution of science and technology in health, linked to the Ministry of Health of Brazil, whose mission is to promote health and social development, generate and disseminate scientific and technological knowledge, and be an agent of citizenship.
In the second part, Paulo Guanaes, a member of the GTC-Fiocruz, will present some results of this research, which originates from the concern with the important and controversial issue of protection of privacy, personal data, intellectual property and copyright. With the authorship of Allan Rocha de Souza, Danilo Doneda, Francisco José Nascimento and Paulo Guanaes (organizer), the study brings together the legal norms identified in the set of Brazilian laws that, according to the authors, have an impact on themes related to health research , such as sharing and reusing data, using personal, sensitive or sensitive data, intellectual property on data, and information security.

Session notes:

avatar for Paulo Cezar Vieira Guanaes

Paulo Cezar Vieira Guanaes

Editor, Oswaldo Cruz Foundation
PhD in progress in Information Science by the Brazilian Institute of Scientific and Technological Information / Federal University of Rio de Janeiro (IBICT / UFRJ) and Master in Information and Communication in Health by the Institute of Communication and Scientific and Technological... Read More →

Paula Xavier Santos

PhD and MS in Information Science by the Brazilian Institute of Scientific and Technological Information / Federal University of Rio de Janeiro (IBICT / UFRJ), is Information and Communication Coordinator of the Oswaldo Cruz Foundation (Fiocruz), a public health research institution... Read More →

Allan Rocha de Souza

PhD in Civil Law by the State University of Rio de Janeiro. Professor and researcher in Civil Law, copyrights and intellectual property in the Law Undergraduate course (ITR-UFRRJ). Researcher and Vice-Coordinator of the National Institute of Technology (INCT) Proprietas (PPGH-UFF... Read More →

Danilo Doneda

Bachelor of Laws from the Federal University of Paraná (1995), Master (1999) and PhD in Law from the State University of Rio de Janeiro (2004). Visiting professor at the Faculty of Law of the State University of Rio de Janeiro. He was General Coordinator of Studies and Market Monitoring... Read More →

Francisco José Nascimento

Master in Management of Documents and Archives by the Federal University of Rio de Janeiro, with Specialization in Management and Protection of the Patrimony of Science and Health by the Oswaldo Cruz Foundation. He holds a degree in Archivology from the Fluminense Federal University... Read More →

Friday May 10, 2019 4:30pm - 5:25pm WEST
Goa Room, 4th Floor, Museu do Oriente Av. Brasília 352, 1350-279 Lisboa, Portugal