Collaborative projects involving research biobanks – ethical and legal aspects of data protection

2015 ◽  
Author(s):  
Eva De Clercq ◽  
Bernice S. Elger
Keyword(s):  
Data Protection ◽  
Legal Aspects ◽  
Research Biobanks

Protecting Genetic Privacy in Biobanking through Data Protection Law

2021 ◽  
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Critical Infrastructure ◽  
Legal Framework ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
General Data ◽  
Research Biobanks ◽  
The Subject ◽  
Data Protection Law

Biobanks are critical infrastructure for medical research. Biobanks, however, are also the subject of considerable ethical and legal uncertainty. Given that biobanks process large quantities of genomic data, questions have emerged as to how genetic privacy should be protected. What types of genetic privacy rights and rights holders should be protected and to what extent? Since 25 May 2018, the General Data Protection Regulation (GDPR) has applied and now occupies a key position in the European legal framework for the regulation of biobanking. This book takes an in-depth look at the function, problems, and opportunities presented by European data protection law under the GDPR as a framework for the protection of genetic privacy in biobanking. It argues that the substantive framework presented by the GDPR already offers an admirable baseline level of protection for the range of genetic privacy rights engaged by biobanking. The book further contends that while numerous problems with this standard of protection are indeed identifiable, the GDPR offers the flexibility to accommodate solutions to these problems, as well as the procedural mechanisms to realise these solutions.

6. Medical Confidentiality

2019 ◽  
pp. 162-200
Author(s):  
G. T. Laurie ◽  
S. H. E. Harmon ◽  
E. S. Dove
Keyword(s):  
Medical Research ◽  
Data Protection ◽  
Medical Records ◽  
Legal Aspects ◽  
Patient Access ◽  
Legal Process ◽  
Medical Confidentiality ◽  
Data Protection Law ◽  
The Relationship

This chapter discusses ethical and legal aspects of medical confidentiality. It covers the relationship between confidentiality and data protection law; the possible exceptions to the confidentiality rule; confidentiality and the legal process; confidentiality for the purposes of medical research; patient access to medical records; remedies for breach of confidentiality; and confidentiality and death.

scholarly journals Legal Aspects of Telepathology

2000 ◽  
Vol 21 (3-4) ◽  
pp. 97-99 ◽  
Author(s):  
Christian Dierks
Keyword(s):  
International Law ◽  
Data Protection ◽  
Data Exchange ◽  
Legal Aspects ◽  
Spatial Distance ◽  
Standards Of Care ◽  
Security Level ◽  
Private International Law ◽  
The European Union ◽  
Cross Border

In some legal surroundings telepathology is considered a breach of registrational barriers. The recommendation of the G 8 states in Europe for required legislation in telemedicine suggests to recognise that the localization of the remote health care professional defines the site not only of licensure but also of liability. This approach must be considered helpful, since it can solve many problems brought about by the doubtful results of private international law and conventions like the European Union (EU) and Lugano Convention. Under today's conditions in private international law it must be considered essential to agree upon a choice of law and stipulate a court of jurisdiction when doing telepathology. However, the opposing aims of insuring the patients claims and avoiding jurisdictions that exceed the local expectations of the medical professional must be reconciled. Data protection and data security are other crucial topics that require attention. Generally speaking, the principles of minimum data exchange, anonymity, pseudonymity and cryptography must be established as a basis for all telepathology procedures. Only when personal data is needed, its use can be legitimated. Written consent of the patient is advised. To guarantee a cross‐border security level the regulations of the EU‐Data Protection Directive need to be transformed into national law. In practise, cross‐border dataflow shall only take place where the security level can be maintained even within the other country. Finally, reimbursement questions must be answered to establish a sound economical basis for telepathology. The spatial distance between the participants may yield the question, whether the service has been rendered to an extent necessary and sufficient for reimbursement. If reimbursement takes place on a cross‐border or cross‐regional level, severe disturbances of the health systems can occur. Regulation schemes or treaties need therefore to be developed to avoid such disturbances and encompass mutual standards of care as well as methods to balance reimbursement.

scholarly journals PERSONAL DATA PROTECTION IN THE FIELD OF HEALTHCARE (CRIMINAL-LEGAL ASPECTS)

2019 ◽  
Vol 1 (50) ◽  
Author(s):  
Тетяна Михайлівна Ямненко ◽  
Ірина Феофанівна Літвінова
Keyword(s):  
Data Protection ◽  
Personal Data ◽  
Legal Aspects ◽  
Personal Data Protection

scholarly journals On the Legal Consequences of Brexit (on the example of personal data protection)

2021 ◽  
Vol 105 (5) ◽  
pp. 45-55
Author(s):  
Mark Entin ◽  
◽  
Dmitriy Galushko ◽  
Keyword(s):  
European Union ◽  
Data Protection ◽  
Personal Data ◽  
Legal Regulation ◽  
Legal Aspects ◽  
The European Union ◽  
Cooperation Agreement ◽  
National Regulation ◽  
Personal Data Protection ◽  
Legal Consequences

The article explores the legal consequences of the UK's withdrawal from the European Union. The scope of personal data protection was taken as an example. The purpose of the article is to study and analyze the legal aspects of the termination of the UK's membership in the European Union, its impact on the cross-border transfer of personal data between the parties, as well as the development of legal regulation in this area. The article shows that, despite the signing of the Withdrawal Agreement, as well as the Trade and Cooperation Agreement, there is a complication of legal regulation, as well as the emergence of potential contradictions and threats to the interests of interested parties. The sphere of personal data protection clearly demonstrates that despite the desire for the sovereignization of legal regulation on the part of the UK, its legal system remains dependent on the legal order of the European Union. The UK's national regulation on personal data will be under constant monitoring by the competent EU authorities, which indirectly confirms the failure to achieve the goals of the full return of the UK's delegated sovereign powers. It is concluded that the EU Court of Justice still retains its jurisdiction over the United Kingdom, in particular, in connection with possibility to challenge decisions on adequacy, as well as through the adoption of its own practice on issues related to personal data protection.

scholarly journals Do we need a biobank law?

2019 ◽  
Vol 43 (6) ◽  
pp. 311-315 ◽  
Author(s):  
Jürgen W. Goebel ◽  
Jürgen Scheller
Keyword(s):  
Data Protection ◽  
Legal Aspects ◽  
Personal Rights ◽  
Model Texts

Abstract This paper deals with the question of whether it is necessary to pass a special law for the establishment and operation of biobanks. For this purpose, some legal aspects are presented by way of example that are involved in operating a biobank (data protection, personal rights, consent, protection against seizure, etc.). The authors then discuss a draft law from 2010 which, however, was rejected by parliamentary committees on the grounds that there was no need for legislating this issue. This is then followed by the description of a second attempt to create a biobank law, which was undertaken by a group of professors from Augsburg and Munich in 2015. Again, the authors conclude that there is no acute need for such a law. Biobanking science and practice have already given rise to regulations (guidelines, model texts, procedural rules, etc.) that create a sufficiently secure basis for bio-banking.

Data Protection and Data Security Regarding Grid Computing in Biomedical Research

2011 ◽  
pp. 76-89
Author(s):  
Yassene Mohammed ◽  
Fred Viezens ◽  
Frank Dickmann ◽  
Juergen Falkner ◽  
Thomas Lingner
Keyword(s):  
Grid Computing ◽  
Data Protection ◽  
Data Security ◽  
High Energy Physics ◽  
Legal Aspects ◽  
Security And Privacy ◽  
Special Focus ◽  
Security Measures ◽  
Security Technology ◽  
Grid Security

This chapter describes security and privacy issues within the scope of biomedical Grid Computing. Grid Computing is of rising interest for life sciences (Konagaya, 2006) and has been used since many years in sciences like high energy physics. Anyhow, medical applications on the grid require a special focus on data security and data protection issues. Based on general security and privacy rules, the authors describe the current state of the art of grid security. Then they describe which additional security measures have to be established in different biomedical grid scenarios. Legal aspects have to be taken into account as well as the current possibilities and flaws of grid security technology. Describing the enhanced security concept in MediGRID (MediGRID, 2005) they outline how medical Grid Computing could fulfill privacy regulations used in more demanding environments.

1. Privacy, technology, and surveillance

2017 ◽  
Author(s):  
Ian J. Lloyd
Keyword(s):  
Information Technology ◽  
Data Protection ◽  
Legal Aspects

This chapter considers various issues concerning privacy, information technology, and surveillance. These include the emergence of a surveillance of society, the legal aspects of surveillance, rights to privacy, surveillance-based legislation, and data protection.

Legal Aspects of Data Protection

Paradigm ◽  
2005 ◽  
Vol 9 (1) ◽  
pp. 98-101
Author(s):  
Anurag K. Agarwal
Keyword(s):  
Data Protection ◽  
Legal Aspects
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