Biobanking for Neurodegenerative Diseases: Challenge for Translational Research and Data Privacy

2021 ◽  
pp. 107385842110366
Author(s):  
Emilia Giannella ◽  
Valentino Notarangelo ◽  
Caterina Motta ◽  
Giulia Sancesario
Keyword(s):  
Neurodegenerative Diseases ◽  
Translational Research ◽  
Data Protection ◽  
Biological Samples ◽  
Data Privacy ◽  
Neurological Diseases ◽  
Great Effort ◽  
General Data Protection Regulation ◽  
In Silico Studies

Biobanking has emerged as a strategic challenge to promote knowledge on neurological diseases, by the application of translational research. Due to the inaccessibility of the central nervous system, the advent of biobanks, as structure collecting biospecimens and associated data, are essential to turn experimental results into clinical practice. Findings from basic research, omics sciences, and in silico studies, definitely require validation in clinically well-defined cohorts of patients, even more valuable when longitudinal, or including preclinical and asymptomatic individuals. Finally, collecting biological samples requires a great effort to guarantee respect for transparency and protection of sensitive data of patients and donors. Since the European General Data Protection Regulation 2016/679 has been approved, concerns about the use of data in biomedical research have emerged. In this narrative review, we focus on the essential role of biobanking for translational research on neurodegenerative diseases. Moreover, we address considerations for biological samples and data collection, the importance of standardization in the preanalytical phase, data protection (ethical and legal) and the role of donors in improving research in this field.

A Layered Approach to Jurisdiction

2017 ◽  
Author(s):  
Dan Jerker B. Svantesson
Keyword(s):  
Data Protection ◽  
Data Privacy ◽  
General Data Protection Regulation ◽  
Legal Rules ◽  
Privacy Laws ◽  
Scope Of Application ◽  
General Data ◽  
Layered Approach ◽  
Substantive Law

This chapter observes how it may be inappropriate to apply a single jurisdictional threshold to diverse instruments such as data privacy laws. In the light of this observation, a proposal is outlined for a ‘layered approach’ under which the substantive law rules of such instruments are broken up into different layers, with different jurisdictional thresholds applied to each such layer. This layered approach is discussed primarily as a technique to be utilized in legal drafting, but it may also be applied in the interpretation and application of legal rules. Article 3 of the European Union’s General Data Protection Regulation, which determines that regulation’s scope of application in a territorial sense, provides a particularly useful lens through which to approach this topic and, thus, the discussion is largely centred around that Article.

A Data Privacy Governance Model

2019 ◽  
Vol 10 (1) ◽  
pp. 74-93
Author(s):  
Margareth Stoll
Keyword(s):  
Corporate Governance ◽  
Data Protection ◽  
Data Privacy ◽  
Business Processes ◽  
Management Systems ◽  
Legal Compliance ◽  
Legal Requirements ◽  
General Data Protection Regulation ◽  
Governance Model ◽  
Information Security Governance

The importance of data privacy, information availability and integrity are increasingly recognized. The new EU general data protection regulation 679/2016 obligates stringent legal requirements with high sanctions for noncompliance. Most organizations worldwide are affected directly or indirectly. It requires overall a risk and evidence-based data privacy management as part of corporate governance. More than 1.6 million organizations worldwide are implementing a standard-based management system, such as ISO 9001 or others. To implement the new data protection regulation in an effective, efficient and sustainable way, the author provides design-oriented guidelines on how to integrate the legal requirements into standard based management systems. The holistic data privacy governance model integrates different information security governance frameworks with standard based management systems in order to comply the regulation. In that way data privacy is part of all strategic, tactical and operational business processes, promotes corporate governance, legal compliance and living data protection.

scholarly journals Delegation-Based Personal Data Processing Request Notarization Framework for GDPR Based on Private Blockchain

2021 ◽  
Vol 11 (22) ◽  
pp. 10574
Author(s):  
Sung-Soo Jung ◽  
Sang-Joon Lee ◽  
Ieck-Chae Euom
Keyword(s):  
Data Processing ◽  
Data Protection ◽  
Data Privacy ◽  
Personal Data ◽  
General Data Protection Regulation ◽  
Personal Data Protection ◽  
Compliance Audit ◽  
General Data ◽  
Data Controller ◽  
Data Subject

With the growing awareness regarding the importance of personal data protection, many countries have established laws and regulations to ensure data privacy and are supervising managements to comply with them. Although various studies have suggested compliance methods of the general data protection regulation (GDPR) for personal data, no method exists that can ensure the reliability and integrity of the personal data processing request records of a data subject to enable its utilization as a GDPR compliance audit proof for an auditor. In this paper, we propose a delegation-based personal data processing request notarization framework for GDPR using a private blockchain. The proposed notarization framework allows the data subject to delegate requests to process of personal data; the framework makes the requests to the data controller, which performs the processing. The generated data processing request and processing result data are stored in the blockchain ledger and notarized via a trusted institution of the blockchain network. The Hypderledger Fabric implementation of the framework demonstrates the fulfillment of system requirements and feasibility of implementing a GDPR compliance audit for the processing of personal data. The analysis results with comparisons among the related works indicate that the proposed framework provides better reliability and feasibility for the GDPR audit of personal data processing request than extant methods.

scholarly journals Personal Data Protection in Russia

2020 ◽  
pp. 95-113
Author(s):  
Alexander Gurkov
Keyword(s):  
Data Protection ◽  
Personal Data ◽  
Legal Framework ◽  
Fundamental Rights ◽  
Special Role ◽  
State Control ◽  
General Data Protection Regulation ◽  
Personal Data Protection ◽  
General Data

AbstractThis chapter considers the legal framework of data protection in Russia. The adoption of the Yarovaya laws, data localization requirement, and enactment of sovereign Runet regulations allowing for isolation of the internet in Russia paint a grim representation of state control over data flows in Russia. Upon closer examination, it can be seen that the development of data protection in Russia follows many of the steps taken at the EU level, although some EU measures violated fundamental rights and were invalidated. Specific rules in this sphere in Russia are similar to the European General Data Protection Regulation. This chapter shows the special role of Roskomnadzor in forming data protection regulations by construing vaguely defined rules of legislation.

scholarly journals δ-secretase in neurodegenerative diseases: mechanisms, regulators and therapeutic opportunities

2020 ◽  
Vol 9 (1) ◽  
Author(s):  
Zhentao Zhang ◽  
Ye Tian ◽  
Keqiang Ye
Keyword(s):  
Neurodegenerative Diseases ◽  
Neurological Diseases ◽  
Amyloid Β ◽  
Biochemical Properties ◽  
Aging Brain ◽  
Posttranslational Regulation ◽  
Diagnostic Biomarker ◽  
Protein Substrates ◽  
Aβ Production

AbstractMammalian asparagine endopeptidase (AEP) is a cysteine protease that cleaves its protein substrates on the C-terminal side of asparagine residues. Converging lines of evidence indicate that AEP may be involved in the pathogenesis of several neurological diseases, including Alzheimer’s disease, Parkinson’s disease, and frontotemporal dementia. AEP is activated in the aging brain, cleaves amyloid precursor protein (APP) and promotes the production of amyloid-β (Aβ). We renamed AEP to δ-secretase to emphasize its role in APP fragmentation and Aβ production. AEP also cleaves other substrates, such as tau, α-synuclein, SET, and TAR DNA-binding protein 43, generating neurotoxic fragments and disturbing their physiological functions. The activity of δ-secretase is tightly regulated at both the transcriptional and posttranslational levels. Here, we review the recent advances in the role of δ-secretase in neurodegenerative diseases, with a focus on its biochemical properties and the transcriptional and posttranslational regulation of its activity, and discuss the clinical implications of δ-secretase as a diagnostic biomarker and therapeutic target for neurodegenerative diseases.

Anonymization, tokenization, encryption. How to recover unrecoverable data

2018 ◽  
Vol 0 (6/2017) ◽  
pp. 9-13
Author(s):  
Olga Dzięgielewska
Keyword(s):  
Risk Analysis ◽  
Data Protection ◽  
Data Privacy ◽  
Personal Data ◽  
Insider Threat ◽  
General Data Protection Regulation ◽  
Analysis Phase ◽  
Data Layer ◽  
General Data ◽  
Financial Consequences

The data privacy is currently vastly commented topic among all the organizations which process personal data due to the introduction of the European Union’s General Data Protection Regulation. Existing methods of data protection are believed to be sufficient as they meet the risk-based approach requirements in every mature organization, yet the number of publicly known data breaches confirms that this assumption is false. The aftermath of such incidents in countless cases prove that the risk-based approach failed as the reputational and financial consequences by far exceed the original estimations. This paper stressed the importance of the data layer protection from the planning, through design, until maintenance stages in the database lifecycle, as numerous attack vectors originating from the insider threat and targeting the data layer still sneak through unnoticed during the risk analysis phase.

scholarly journals Data protection, scientific research, and the role of information

2020 ◽  
Author(s):  
Rossana Ducato
Keyword(s):  
Data Protection ◽  
Critical Role ◽  
Scientific Research ◽  
Information Provision ◽  
Research Information ◽  
Legal Regime ◽  
General Data Protection Regulation ◽  
General Data ◽  
Role Of Information

This paper aims to assess the information duties set out in the General Data Protection Regulation (GDPR) and national adaptations when the purpose of processing is scientific research. Information about the processing plays a critical role for data subjects in general. However, it becomes even more central in the research context, due to the peculiarities of the legal regime applicable to it. The analysis critically points out that the GDPR’s information obligations are not entirely satisfying and present some flaws. Furthermore, the GDPR information duties risk suffering from the same shortcomings usually addressed in the literature about mandated disclosures. The paper argues that the principle of transparency, developed as a “user-centric” concept, can support the adoption of solutions that embed behavioural insights to support the rationale of the information provision better.

scholarly journals Neuroprotection by Micronutrients and Cannabidiol (CBD) in Neurodegenerative Diseases

2020 ◽  
pp. 1-10
Author(s):  
Kedar N. Prasad ◽  
Kedar N. Prasad
Keyword(s):  
Oxidative Stress ◽  
Antioxidant Enzymes ◽  
Neurodegenerative Diseases ◽  
Glutamate Receptors ◽  
Clinical Studies ◽  
Cannabinoid Receptors ◽  
Neurological Diseases ◽  
Endocannabinoid System ◽  
Protective Proteins

The major objectives of this review are to elucidate the role of antioxidants and cannabidiol (CBD) in reducing oxidative stress, inflammation, and glutamate levels, which contribute to the pathogenesis of human neurological diseases. Antioxidants act by: (a) donation of electrons to molecules with unpaired electrons to neutralize them, (b) activation of ROS-resistant Nrf2 to enhance the levels of antioxidant enzymes, (c) restoration of deficiency of antioxidants to normal levels, (d) alterations in the expression of microRNAs, which guide their respective mRNAs to translate protective proteins, and (e) prevention of the release and toxicity of glutamate. CBD acts by: (a) activating endocannabinoid system, which consists of anandamide and archidonoylglycerol, cannabinoid receptors CB1R and CB2R, and their synthesizing and degrading enzymes, (b) acting as an agonist to non-cannabinoid receptors, such as dopamine, serotonin, and adenosine, (c) acting as an inhibitor of serotonin re-uptake, and (d) acting as an antagonist to glutamate receptors. Since antioxidants and CBD act primarily by different mechanisms, it is proposed that combination of the two may be more effective than either individually. No review on this topic has been published. Pre-clinical and clinical studies are suggested to test the efficacy of proposed combination in selected neurodegenerative diseases.

scholarly journals The Digital tax system in the light of GDPR

2018 ◽  
Vol 2 (2) ◽  
pp. 183-190
Author(s):  
Martin Daňko ◽  
Petra Žárská
Keyword(s):  
Data Protection ◽  
Crucial Role ◽  
Personal Data ◽  
Modern World ◽  
Tax System ◽  
General Data Protection Regulation ◽  
Eu Member States ◽  
State Administration ◽  
General Data

The digital tax system is becoming extremely essential in the modern world. As we look at the system itself as a great benefit for its users and states as well, we tend to forget the role of personal data within it. Personal data play crucial role in the errorless digital tax system. The new regulation of EU, General Data Protection Regulation is addressing processing of personal data within the state administration of EU member states. The aim of this article is to examine the effect of GDPR on the digital tax system and encourage wide academic and public discussion in relation to processing of personal data in the digital tax system.

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