scholarly journals A CLARIN Contractual Framework for Sharing Personal Data for Scientific Research

Introduction ◽  
2020 ◽  
Author(s):  
Krister Lindén ◽  
Aleksei Kelli ◽  
Alexandros Nousias
Keyword(s):  
Scientific Research ◽  
Personal Data

Introducing Key Elements Regarding Access to Personal Data for Scientific Research in the Perspective of Developing Innovative Medicines

2020 ◽  
Vol 27 (3) ◽  
pp. 195-212
Author(s):  
Jean Herveg ◽  
Annagrazia Altavilla
Keyword(s):  
Data Protection ◽  
Open Data ◽  
Scientific Research ◽  
Personal Data ◽  
Private Life ◽  
Fundamental Rights ◽  
Future Research ◽  
General Data Protection Regulation ◽  
Public Sector Information ◽  
General Data

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.

scholarly journals ON SOME ASPECTS OF DATA PROTECTION IN SCIENTIFIC RESEARCH

2021 ◽  
Author(s):  
Petya Dankova ◽  
Keyword(s):  
Data Protection ◽  
Code Of Conduct ◽  
Scientific Research ◽  
Personal Data ◽  
Ethical Aspects ◽  
European Code ◽  
General Regulation

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.

Article 7 Conditions for consent

2020 ◽  
Author(s):  
Eleni Kosta
Keyword(s):  
Information Society ◽  
Scientific Research ◽  
Personal Data ◽  
Article 9 ◽  
Data Portability ◽  
Definition Of ◽  
General Conditions

Article 4(11) (Definition of consent) (see too recitals 32 and 33 on consent for scientific research purposes); Article 6(1)(a) (Lawfulness of processing—consent) (see also recitals 40 and 42–43); Article 8 (Conditions applicable to child’s consent in relation to information society services); Article 9(2) (Processing of special categories of personal data—consent) (see too recital 50); Article 13(2)(c) (Information to be provided—withdrawal of consent); Article 14(2)(d) (Information to be provided—withdrawal of consent); Article 17(1)(b) (Right to erasure—withdrawal of consent) (see also recital 65); Article 18(2) (Right to restriction of processing); Article 20(1)(a) (Right to data portability) (see also recital 68); Article 22(2)(c) (Automated decisions and profiling) (see also recital 71); Article 49(1)(a) (Derogations for specific situations) (see also recital 111); Article 83 (General conditions for imposing administrative fines) (see also recitals 155 and 171).

scholarly journals The Impact of the New European Union General Data Protection Regulation (GDPR) on Data Collection at Mass Gatherings

2019 ◽  
Vol 34 (s1) ◽  
pp. s138-s138
Author(s):  
Annelies Scholliers ◽  
Dimitri De Fré ◽  
Inge D’haese ◽  
Stefan Gogaert
Keyword(s):  
European Union ◽  
Data Collection ◽  
Data Protection ◽  
Scientific Research ◽  
Personal Data ◽  
The European Union ◽  
General Data Protection Regulation ◽  
Mass Gatherings ◽  
General Data ◽  
The Law

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.

scholarly journals Introduction

2021 ◽  
pp. 1-7
Author(s):  
Santa Slokenberga ◽  
Olga Tzortzatou ◽  
Jane Reichel
Keyword(s):  
Data Protection ◽  
Scientific Research ◽  
Personal Data ◽  
Practical Experience ◽  
General Data Protection Regulation ◽  
Eu Member States ◽  
General Data ◽  
The Uk ◽  
Shed Light

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.

scholarly journals Record linkage of population-based cohort data from minors with national register data: a scoping review and comparative legal analysis of four European countries

2021 ◽  
Vol 1 ◽  
pp. 58
Author(s):  
Julia Nadine Doetsch ◽  
Vasco Dias ◽  
Marit S. Indredavik ◽  
Jarkko Reittu ◽  
Randi Kallar Devold ◽  
...  
Keyword(s):  
The Netherlands ◽  
Public Good ◽  
Scoping Review ◽  
Data Protection ◽  
Record Linkage ◽  
Scientific Research ◽  
Personal Data ◽  
Member States ◽  
National Legislation ◽  
Cohort Data

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.

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