scholarly journals ON SOME ASPECTS OF DATA PROTECTION IN SCIENTIFIC RESEARCH

2021 ◽  
Author(s):  
Petya Dankova ◽  

This paper discusses issues related to gathering, processing and protection of personal data in scientific research. Highlights of the General Regulation on Data Protection and the European Code of Conduct for Research Intregrity concerning the regulatory and ethical aspects of research are presented.

2020 ◽  
Vol 27 (3) ◽  
pp. 195-212
Author(s):  
Jean Herveg ◽  
Annagrazia Altavilla

Abstract This article aims at opening discussions and promoting future research about key elements that should be taken into account when considering new ways to organise access to personal data for scientific research in the perspective of developing innovative medicines. It provides an overview of these key elements: the different ways of accessing data, the theory of the essential facilities, the Regulation on the Free Flow of Non-personal Data, the Directive on Open Data and the re-use of public sector information, and the General Data Protection Regulation (GDPR) rules on accessing personal data for scientific research. In the perspective of fostering research, promoting innovative medicines, and having all the raw data centralised in big databases localised in Europe, we suggest to further investigate the possibility to find acceptable and balanced solutions with complete respect of fundamental rights, as well as for private life and data protection.


2020 ◽  
pp. 1-9
Author(s):  
Tataru Stefan Razvan ◽  
Irene Nica

Sports activities attract an impressive number of participants, manifesting themselves in a multitude of forms, in leisure or performance sports, in and out of the sports ground. In the context in which the sports industry processes a variety of personal data of athletes, including sensitive data such as information concerning health, we aim to analyse the impact of the General Regulation on the protection of personal data in sports activities. In the first part of the study we analysed the incidence of sport in daily life and the forms of organization of sports structures. Subsequently, we focused our attention in particular on the way in which the personal data of the athletes are processed, the rights they enjoy under the new European regulations and the measures that the operators should ensure for the protection of these data.


2021 ◽  
Vol 12 ◽  
Author(s):  
Dorota Krekora-Zając ◽  
Błażej Marciniak ◽  
Jakub Pawlikowski

Personal data protection has become a fundamental normative challenge for biobankers and scientists researching human biological samples and associated data. The General Data Protection Regulation (GDPR) harmonises the law on protecting personal data throughout Europe and allows developing codes of conduct for processing personal data based on GDPR art. 40. Codes of conduct are a soft law measure to create protective standards for data processing adapted to the specific area, among others, to biobanking of human biological material. Challenges in this area were noticed by the European Data Protection Supervisor on data protection and Biobanking and BioMolecular Resources Research Infrastructure–European Research Infrastructure Consortium (BBMRI.ERIC). They concern mainly the specification of the definitions of the GDPR and the determination of the appropriate legal basis for data processing, particularly for transferring data to other European countries. Recommendations indicated in the article, which are based on the GDPR, guidelines published by the authority and expert bodies, and our experiences regarding the creation of the Polish code of conduct, should help develop how a code of conduct for processing personal data in biobanks should be developed.


2019 ◽  
Vol 34 (s1) ◽  
pp. s138-s138
Author(s):  
Annelies Scholliers ◽  
Dimitri De Fré ◽  
Inge D’haese ◽  
Stefan Gogaert

Introduction:As of May 2018, a new European privacy law called the General Data Protection Regulation (GDPR) is in order. With this law, every organization operating in the European Union (EU), needs to adhere to a strict set of rules concerning collection and processing of personal data.Aim:To explore the consequences of the GDPR for data collection at mass gatherings in the European Union.Methods:Since the law was published on April 27, 2016, a thorough reading of the law was conducted by 4 persons with a background in mass gathering health. The GDPR consists of 99 articles organized into 11 chapters. There are also 173 recitals to further explain certain ambiguities. Key articles and recitals relating to healthcare and scientific research were identified. Possible pitfalls and opportunities for data collection and processing at mass gatherings were noted.Discussion:Under article 4, key definitions are noted. There is a clear definition of “data concerning health”. According to the GDPR, health data is a special category of personal data which should not be processed according to article 9(1). However, there is an exception for scientific research (article 9(2)(j)). There are a few safeguards in place, as laid out in article 89. One interesting point is that according to article 89(2), certain derogations can take place if the law interferes with scientific research. The GDPR has major consequences for data collection and processing in the EU. However, with the use of certain safeguards (e.g., pseudonymization) there are still ample opportunities for scientific research. It is important to review one’s method of data collection to make sure it complies with the GDPR.


Author(s):  
Juliano Gouveia dos SANTOS ◽  
◽  
Lohan Alves ALMEIDA ◽  
Hélio Rubens SOARES ◽  
◽  
...  

This article specifies the definition of the current General Law on Protection of Personal Data (LGPD) and the Law that served as inspiration, a General Regulation on Data Protection (GDPR). The purpose of the text is to demonstrate the relevance of these legislative devices to the lives of citizens today, when everything revolves around digital information. Methodologically, a literature review on the topic, present in physical and digital collections, is combined with a case study. As a result of the study, we saw that some technological considerations about the implementation of systems and their adequacy to the new Law, exemplify the ways of effectively applying the security of personal data.


Author(s):  
Santa Slokenberga ◽  
Olga Tzortzatou ◽  
Jane Reichel

AbstractThe General Data Protection Regulation (GDPR) is already four years old legal instrument, with over two years of practical experience, yet, several central questions on its application, its importance in scientific research, rights of the data subjects, and obligations on the controllers and processors remain uncharted. In this edited volume, questions ranging from the meaning of the GDPR provisions for a particular research project to impact of the GDPR on long term collaborations, when the UK is leaving the EU are is discussed. This chapter sets out the aim of this book and provides an overview of how various contributions interplay to shed light on how the GDPR shapes the research regimes on the use of personal data in biobanking by EU Member States.


2021 ◽  
Vol 1 ◽  
pp. 58
Author(s):  
Julia Nadine Doetsch ◽  
Vasco Dias ◽  
Marit S. Indredavik ◽  
Jarkko Reittu ◽  
Randi Kallar Devold ◽  
...  

Background: The General Data Protection Regulation (GDPR) was implemented to build an overarching framework for personal data protection across the European Union/Economic Area (EU/EEA). Linkage of data directly collected from cohort participants based on individual consent must respect data protection rules and privacy rights of data subjects. Our objective was to investigate possibilities of linking cohort data of minors with routinely collected education and health data comparing EU/EEA member states. Methods: A legal comparative analysis and scoping review was conducted of openly online accessible published laws and regulations in EUR-Lex and national law databases on GDPR’s implementation in Portugal, Finland, Norway, and the Netherlands and its connected national regulations purposing record linkage for health research that have been implemented up until April 30, 2021. Results: EU/EEA has limited legislative authority over member states. The GDPR offers flexibility for national legislation. Exceptions to process personal data, e.g., public interest and scientific research, must be laid down in EU/EEA or national law. Differences in national interpretation caused obstacles in cross-national research and record linkage: Portugal requires written consent and ethical approval; Finland allows linkage mostly without consent through the national Data Protection Supervisory Authority; Norway when based on regional ethics committee’s approval and adequate information technology safeguarding confidentiality; the Netherlands mainly bases linkage on the opt-out system and Data Protection Impact Assessment. Conclusions: Though the GDPR is the most important legal framework, national legislation execution matters most when linking cohort data with routinely collected health and education data. As national interpretation varies, legal intervention balancing individual right to informational self-determination and public good is gravely needed for scientific research. More harmonization across EU/EEA could be helpful but should not be detrimental in those member states which already opened a leeway for registries and research for the public good without explicit consent.


2019 ◽  
pp. 79-101 ◽  
Author(s):  
Aleksandra Pyka

This article refers to the issue of personal data processing conducted in connection with scientific research and in accordance with the provisions of Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation). It is not uncommon for the purposes of scientific research to process personal data, which is connected with the obligation to respect the rights of the data of the subjects involved. Entities conducting scientific research that process personal data for this purpose are required to apply the general reg­ulation governing, among others, the obligations imposed on the controllers. The issue of personal data processing for scientific research purposes has also been regulated in national legislation in connection with the need to apply the General Data Protection Regulation. The article discusses the basics of the admissibility of data processing for the needs of scientific research; providing personal data regarding criminal convictions and offences extracted from public registers at the request of the entity conducting scientific research; exercising the rights of the data of the subjects concerned; as well as the implementation of appropriate technical and organizational measures to ensure the security of data processing. In addition, the article discusses the issue of anonymization of personal data carried out after achieving the purpose of personal data processing, as well as the processing of special categories of personal data. The topics discussed in the article were not discussed in detail, as this would require further elaboration in a publication with a much wider volume range.


2020 ◽  
pp. 161-180
Author(s):  
Aleksandra Pyka

This article deals with the issue of impact assessment for the protection of personal data. This is a new obligation for the controller. The article presents the essence of impact assessment (DPIA), exclusion from the obligation to carry it out, the prerequisite for mandatory DPIA, the role of the data protection officer and the powers of the supervisory authority. The analysis of legal provisions related to the impact assessment presented here does not refer to specific situations, due to the wide scope for interpreting specific phrases contained in the General Regulation. Nevertheless, the article discusses the issue of conducting data protection impact assessments as one of the most problematic obligations incumbent on the controller, who in practice raises many doubts. The DPIA has been imprecisely regulated by the EU legislator, thus leaving controllers plenty of leeway to interpret the terms used in the General Regulation. In addition, carrying out a DPIA in practice (as a new obligation on entities setting the purposes and means of data processing) can be problematic due to the lack of harmonized methods for conducting a data protection impact assessment. However, controllers cannot assign DPIA implementation to other entities involved in data processing, such as an entity processing personal data on behalf of another. Entities setting the purposes and methods of data processing should not only take into account the provisions of the General Regulation but also a list of data processing operations that are obligatorily subject to DPIA. Controllers fulfilling the obligation to carry out a data protection impact assessment will be obliged by the supervisory authority to demonstrate how to carry out a data protection impact assessment.


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