Discuss on the access, use and preservation of databases from the current legislation. This was the central objective of the Seminar on Privacy and Treatment of Personal Data in Health Research and Management, an initiative of the Center for Data Integration and Knowledge for Health (Cidacs), in partnership with the Laboratory of Data Scientists of the Institute of Applied Economic Research (IpeaData-Lab). The event, which took place in Salvador last Tuesday, 5, brought together the collaborators of the filmmakers and representatives of Fiocruz Brasília, the Ministry of Health, the Federal Public Ministry (MPF) and the Federal University of Bahia (UFBA).
“This space does not intend to propose immediate changes. It was intended to discuss this normative conjuncture, which is undergoing intense change, keeping the focus on an important issue, that of scientific research. We understand that the use of these personal administrative data for knowledge production returns to society as a benefit, “says Cidacs coordinator Maurício Barreto.
According to IpeaData-Lab’s coordinator, Lucas Mation, “there is a need to reflect on issues that are still pending in legislation and on the formalization of data link centers, so that they can formalize and standardize the activities they develop and win strength and institutional weight “.
To align the discussion, the programming was divided into three rounds of debates, which included the presentation of the experiences of the Cidacs and the IpeaData-Lab, the discussion on the use of personal information from the current legislation and the Regulatory Framework.
Federal prosecutor Marcos Antônio da Silva Costa explained about the National Emergency Response Network of the Federal Public Prosecutor ‘s Office of the Federal Public Prosecutor’ s Office on the Epidemic of Aedes aegypti – Dengue, Chikungunya and Zika. During his presentation, he highlighted the importance and necessity of these spaces of dialogue and evaluated as a moment of approximation. The General Coordinator of Health and Normative Acts of the General Law of the Union, Maria Paula Amorim de Barros Lima, presented the aspects of the Law on Access to Information and spoke about the process for the transfer of personal data. Lawyer Danilo Doneda took the approach to privacy and protection of personal data.
“Brazil does not have a clear rule that can be applied to all situations with respect to data privacy. Increasingly, data are used in all sectors, by the most diverse types of companies and public bodies, and there is no general legislation that guarantees the citizen some basic rights, such as access, correction and control. There are rules that deal with privacy and rules that deal with specific content, as in the case of the internet, but there is no unified framework, “says Doneda.
With regard to the protection and processing of personal data, Brazil does not yet have a law. As a member of the Open Government Partnership (OGP), the country implemented the Law on Access to Information (LAI). Regulated through Decree 7,724 / 2012, LAI established that the organs and entities of the federal public administration adapted their information management policies, promoting the necessary adjustments to the processes of registration, processing, processing and filing of documents and information. The Bill 5276/2016, which deals with the processing of personal data to guarantee the free development of the personality and dignity of the natural person, is currently being processed in the Chamber of Deputies. All of these changes raise the need for discussion and interpretation on the subject, especially as regards the principles and criteria for the assignment, use and preservation of data contained in information systems under government custody for research and management support activities, such as happens in the Cidacs.
“Cidacs has a broader view of health and therefore needs to integrate with personal data from the databases to match all areas that impact on health,” explains Cidacs deputy coordinator Maria Yury Ichihara.
The seminar had a good repercussion among the participants, who found in the initiative an important exchange environment in which they could expose the needs, difficulties and dialogue about the possibilities of paths to be followed. “Cidacs has been innovating on many fronts and has innovated again by proposing this space for the exchange of knowledge,” said Tereza Campello, researcher at Fiocruz.