scholarly journals Mapping the Biobank Landscape in Greece

2021 ◽  
pp. 291-307
Author(s):  
Olga Tzortzatou ◽  
Anastasia Siapka
Keyword(s):  
Clinical Practice ◽  
Biomedical Research ◽  
Public Interest ◽  
Personal Data ◽  
The Public ◽  
International Laws ◽  
Potential Impact ◽  
Data Collections

AbstractThe biobank landscape in Greece is mainly defined by tissue and data collections created in the course of clinical practice whose samples are subsequently repurposed for research. Given that there is no specific Greek biobank law, these collections have been so far governed through provisions drawn from the domestic civil and constitutional legal armamentarium concerning (biomedical) research as well as soft and hard EU and international laws. This chapter provides an empirical overview of the biobank landscape in Greece, describing existing biobanks and tissue collections potentially used for research in a non-exhaustive manner. Next, it explores how the Greek Law on the Protection of Personal Data envisages individuals’ rights in the context of biobanking research and how these rights are weighted against the public interest. Finally, it evaluates the potential impact of the GDPR on biobanking in Greece.

scholarly journals Biobank and Biomedical Research: Responsibilities of Controllers and Processors Under the EU General Data Protection Regulation

2021 ◽  
pp. 61-89
Author(s):  
Ana Nordberg
Keyword(s):  
Biomedical Research ◽  
Public Interest ◽  
Data Protection ◽  
Personal Data ◽  
Historical Research ◽  
General Data Protection Regulation ◽  
The Public ◽  
General Data ◽  
The Eu

AbstractBiobanks are essential infrastructures in current health and biomedical research. Advanced scientific research increasingly relies on processing and correlating large amounts of genetic, clinical and behavioural data. These data are particularly sensitive in nature and the risk of privacy invasion and misuse is high. The EU General Data Protection Regulation (GDPR) developed and increased harmonisation, resulting in a framework in which the specific duties and obligations of entities processing personal data—controllers and processors—were defined. Biobanks, in the exercise of their functions, assume the role of controllers and/or processors and as such need to comply with a number of complex rules. This chapter analyses these rules in the light of Article 89 GDPR, which creates safeguards and derogations relating to ‘processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes’. It identifies key compliance challenges faced by biobanks as data controllers and processors, such as determining whether the GDPR is applicable and its intersection with other regulations; when a biobank should be considered controller and processor; and what are the main duties of biobanks as data controllers and processors and options for compliance.

Article 5 Principles relating to processing of personal data

2020 ◽  
Author(s):  
Cécile de Terwangne
Keyword(s):  
Public Interest ◽  
Personal Data ◽  
Historical Research ◽  
The Public ◽  
Article 5

Article 6(1) (Lawfulness of processing) (see too recitals 40–49); Article 6(4) (Exceptions to the requirement of compatible purposes for further processing and criteria to ascertain whether a purpose of further processing is compatible with the purpose for which the personal data are initially collected) (see too recital 50); Article 12 (Transparent information) (see too recitals 58–59); Articles 13–15 (Information and access to personal data) (see also recitals 60–64); Article 24 (Responsibility of the controller) (see too recitals 74–78) ; Article 32 (Security of processing) (see too recital 83); Article 89(1) (Safeguards and derogations relating to processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes) (see too recitals 158–163).

Conditions of the Right to Erasure

2020 ◽  
pp. 196-274
Author(s):  
Jef Ausloos
Keyword(s):  
Public Interest ◽  
Freedom Of Expression ◽  
Personal Data ◽  
Historical Research ◽  
Legal Obligation ◽  
The Public ◽  
The Third ◽  
Legal Provisions ◽  
The Right ◽  
Data Subject

This chapter zooms in on Article 17 GDPR, on the right to erasure (‘right to be forgotten’). It meticulously dissects the three paragraphs of this provision. The first paragraph lists six rights-to-erasure triggers which can be summarized as: (a) purpose expiration; (b) withdrawal of consent; (c) right to object; (d) unlawful processing; (e) legal obligation; and (f) withdrawal of consent by minors in the online environment. The second paragraph comprises an odd extension of the right to erasure, enabling data subjects to request that controllers who have made the personal data public, communicate potential erasure to anyone else processing that same personal data. The third paragraph lists five exemptions to the right to erasure, summarized as: (a) freedom of expression and information; (b) legal obligation or task carried out in the public interest or official authority; (c) public interest in the area of public health; (d) public interest archiving, scientific and historical research, or statistical purposes; and (e) legal claims. What becomes clear right away is how both the right-to-erasure’s triggers and exemptions all refer to other legal provisions in and outside the GDPR. As such, the right to erasure can be seen as a central hub in the GDPR, bringing together key data protection principles from the perspective of data subject empowerment.

Privacy in the 21st Century

2015 ◽  
pp. 1638-1652
Author(s):  
Panagiotis Kitsos ◽  
Aikaterini Yannoukakou
Keyword(s):  
Public Interest ◽  
Focal Point ◽  
Personal Information ◽  
Open Data ◽  
Personal Data ◽  
Common Denominator ◽  
Patriot Act ◽  
The Public ◽  
Personal Data Protection ◽  
The Common

The events of 9/11 along with the bombarding in Madrid and London forced governments to resort to new structures of privacy safeguarding and electronic surveillance under the common denominator of terrorism and transnational crime fighting. Legislation as US PATRIOT Act and EU Data Retention Directive altered fundamentally the collection, processing and sharing methods of personal data, while it granted increased powers to police and law enforcement authorities concerning their jurisdiction in obtaining and processing personal information to an excessive degree. As an aftermath of the resulted opacity and the public outcry, a shift is recorded during the last years towards a more open governance by the implementation of open data and cloud computing practices in order to enhance transparency and accountability from the side of governments, restore the trust between the State and the citizens, and amplify the citizens' participation to the decision-making procedures. However, privacy and personal data protection are major issues in all occasions and, thus, must be safeguarded without sacrificing national security and public interest on one hand, but without crossing the thin line between protection and infringement on the other. Where this delicate balance stands, is the focal point of this paper trying to demonstrate that it is better to be cautious with open practices than hostage of clandestine practices.

Article 19 Notification obligation regarding rectification or erasure of personal data or restriction of processing

2020 ◽  
Author(s):  
Gloria González Fuster
Keyword(s):  
Public Interest ◽  
Personal Data ◽  
Historical Research ◽  
Information Communication ◽  
The Public ◽  
Right To Be Forgotten ◽  
Definition Of ◽  
Data Subject

Article 4(9) (Definition of ‘recipient’); Article 12 (Transparent information, communication and modalities for the exercise of the rights of the data subject); Article 16 (Right to rectification), Article 17(1) (Right to erasure (‘right to be forgotten’)); Article 18 (Right to restriction of processing); Article 58(2)(g) (Powers of supervisory authorities); Article 89(3) (Safeguards and derogations relating to processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes).

scholarly journals Digital health and digital information in the context of big data. An ethical insight on interests

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
M Mirchev ◽  
A Kerekovska
Keyword(s):  
Public Interest ◽  
Digital Health ◽  
Scientific Progress ◽  
Personal Data ◽  
Health Data ◽  
Individual Responsibility ◽  
Digital Information ◽  
The Public ◽  
Rational Argumentation ◽  
The Individual

Abstract Background Health data is the key link between the prospects we face in improving health services and the context of current information reality. In the field of public health, the sheer scale of data collecting, digitalization and use is already raising questions related to the ethical norms among different stakeholders. The fact that it is personal data at stake, confronts at least two views: the individual versus the public interest. The more we ease the process of health data aggregation and use, the more risks of possible harms we face. So, whose interest is a priority? Aim To consider if it is possible to balance the conflicting interests of individuals and society in the digital health era by advocating for mutual compromises and rational argumentation. Methods Ethical, documental and historical research. Results The amount of digital health related personal data transforms both opportunities for improved healthcare and research, and possible uncertainties related to improper use, harms, abuses, injustice. This nourishes individuals' doubts and potentially restricts the public interest by putting limits on future use of data. A balance between the confronting interests is needed. Granting ownership rights over data requires entirely new legal frame, since property rights hardly encompass the unique nature of information. Moreover, data is a valuable artefact, and ownership could provoke further commercialization. On the other hand, it is virtually impossible to put a separating line between commercial and ideal use of health data for care improvements and science. Our focus should be on the ideal use and essentially on insuring individual's privacy and confidentiality, but not at the expense of public benefits and scientific progress. Conclusions Health information is a powerful tool, and its utilization suggests compromises, which are possible if rational argumentation and support is provided to individuals with the aim to overcome the existing discrepancies. Key messages The appearance of digital health fully represents the dynamic information reality in which constructing a balance between different stakeholder’s interests is vital and not impossible to achieve. Healthcare prospects depend on our individual responsibility and willing to share as we have the data and the means to use and secure it, and we have the duty to do it.

Processing of personal data relating to the health of the data subject in a pandemic situation

Glimpse ◽  
2021 ◽  
Vol 22 (1) ◽  
pp. 95-99
Author(s):  
Juan Francisco Rodriguez Ayuso ◽  
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Personal Data ◽  
The State ◽  
Community Level ◽  
Interested Party ◽  
Health Crisis ◽  
The Public ◽  
Vital Interest ◽  
Data Subject

This study offers a systematic, exhaustive and updated investigation of the declaration of the state of alarm and the processing of personal data relating to the health of citizens affected and/or potentially affected by the exceptional situation resulting from COVID-19. Specifically, it analyses the distinction between the state of alarm and the states of exception and siege and the possible effect on the fundamental right to the protection of personal data in exceptional health crisis situations and the effects that this declaration may have on the applicable regulations, issued, at a Community level. Next, and taking into consideration all the general and sectorial regulations applicable to data protection and health, we proceed to the analysis of the legitimate bases and the exceptions that, applicable to situations of health emergency such as the present one, enable the processing, taking into account the nature of the person who intervenes as the controller, making special emphasis on the public interest pursued by the Public Administrations and on the vital interest of the interested party.

Article 16 Right to rectification

2020 ◽  
Author(s):  
Cécile de Terwangne
Keyword(s):  
Public Interest ◽  
Personal Data ◽  
Data Accuracy ◽  
Historical Research ◽  
Information Communication ◽  
The Public ◽  
Article 5 ◽  
Data Subject

Article 5(d) (Principles relating to processing of personal data—accuracy) (see too recital 39); Article 12 (Transparent information, communication and modalities for the exercise of the rights of the data subject) (see too recital 59); Article 19 (Notification obligation regarding rectification or erasure of personal data or restriction of processing); Article 23 (Restrictions) (see too recital 73); Article 89 (Safeguards and derogations relating to processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes) (see too recital 156).

Article 86 Processing and public access to official documents

2020 ◽  
Author(s):  
Kranenborg Herke
Keyword(s):  
Member State ◽  
Public Interest ◽  
Personal Data ◽  
Public Authority ◽  
Public Access ◽  
State Law ◽  
The Public ◽  
Public Body ◽  
The Right

Personal data in official documents held by a public authority or a public body or a private body for the performance of a task carried out in the public interest may be disclosed by the authority or body in accordance with Union or Member State law to which the public authority or body is subject in order to reconcile public access to official documents with the right to the protection of personal data pursuant to this Regulation.

Article 25 Data protection by design and by default

2020 ◽  
Author(s):  
Lee A. Bygrave
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Codes Of Conduct ◽  
Personal Data ◽  
Historical Research ◽  
Individual Decision Making ◽  
The Public ◽  
Definition Of ◽  
Article 5 ◽  
Data Subject

Article 4(5) (Definition of ‘pseudonymisation’) (see too recital 28); Article 5(2) (Accountability) (see too recital 11); Article 6(4)(e) (Compatibility); Article 22 (Automated individual decision-making, including profiling) (see too recital 71); Article 24 (Responsibility of controllers); Article 28 (Processors) (see too recital 81); Article 32 (Security of processing) (see too recital 83); Article 34(3)(a) (Communication of personal data breach to data subject) (see too recitals 87–88); Article 35 (Data protection impact assessment) (see too recital 84); Article 40 (Codes of conduct); Article 83(2)(d) and 83(4) (Fines); Article 89(1) (Safeguards relating to processing of personal data for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes).

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