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:https://docs.google.com/document/d/160-8LodCuRlZCYgQV7Zzhnx0ApPRmcf7D2oBMe08mzE/edit
