scholarly journals Communicating Identifiability Risks to Biobank Donors

2017 ◽  
Vol 27 (1) ◽  
pp. 123-136 ◽  
Author(s):  
T.J. KASPERBAUER ◽  
MICKEY GJERRIS ◽  
GUNHILD WALDEMAR ◽  
PETER SANDØE
Keyword(s):  
Risk Communication ◽  
Data Sharing ◽  
Data Protection ◽  
Consent Process ◽  
Genomics Research ◽  
Simplified Method ◽  
Different Types ◽  
Privacy Breaches ◽  
Identification Techniques ◽  
Current Standards

Abstract:Recent highly publicized privacy breaches in healthcare and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This article focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or a simplified method of communicating risks during the consent process.

scholarly journals Application of Blockchain in Education: GDPR-Compliant and Scalable Certification and Verification of Academic Information

2021 ◽  
Vol 11 (10) ◽  
pp. 4537
Author(s):  
Christian Delgado-von-Eitzen ◽  
Luis Anido-Rifón ◽  
Manuel J. Fernández-Iglesias
Keyword(s):  
Data Protection ◽  
Personal Data ◽  
General Data Protection Regulation ◽  
Certification System ◽  
Proposed Model ◽  
Different Types ◽  
International Regulations ◽  
Innovative Solution ◽  
General Data ◽  
Academic Information

Blockchain technologies are awakening in recent years the interest of different actors in various sectors and, among them, the education field, which is studying the application of these technologies to improve information traceability, accountability, and integrity, while guaranteeing its privacy, transparency, robustness, trustworthiness, and authenticity. Different interesting proposals and projects were launched and are currently being developed. Nevertheless, there are still issues not adequately addressed, such as scalability, privacy, and compliance with international regulations such as the General Data Protection Regulation in Europe. This paper analyzes the application of blockchain technologies and related challenges to issue and verify educational data and proposes an innovative solution to tackle them. The proposed model supports the issuance, storage, and verification of different types of academic information, both formal and informal, and complies with applicable regulations, protecting the privacy of users’ personal data. This proposal also addresses the scalability challenges and paves the way for a global academic certification system.

Necessity of Key Aggregation Cryptosystem for Data Sharing in Cloud Computing

2019 ◽  
pp. 1393-1407
Author(s):  
R. Deepthi Crestose Rebekah ◽  
Dhanaraj Cheelu ◽  
M. Rajasekhara Babu
Keyword(s):  
Cloud Computing ◽  
Data Sharing ◽  
Data Protection ◽  
Cloud Storage ◽  
Symmetric Encryption ◽  
Secure Storage ◽  
Constant Size ◽  
Secret Keys ◽  
Protection Mechanisms ◽  
Existing Data

Cloud computing is one of the most exciting technologies due to its ability to increase flexibility and scalability for computer processes, while reducing cost associated with computing. It is important to share the data securely, efficiently, and flexibly in cloud storage. Existing data protection mechanisms such as symmetric encryption techniques are unsuccessful in preventing data sharing securely. This article suggests Key aggregate cryptosystem which produce constant size ciphertexts in order to delegate decryption rights for any set of ciphertexts. The uniqueness is that one can aggregate any number of secret keys and make them as compact as a single key. This compact aggregate key can be easily sent to others with very limited secure storage.

scholarly journals Risk Surface: A Visualization of Data Sharing Risk for Enterprise Users

2019 ◽  
Vol 63 (1) ◽  
pp. 297-301
Author(s):  
Mark F. St. John ◽  
Woodrow Gustafson ◽  
April Martin ◽  
Ronald A. Moore ◽  
Christopher A. Korkos
Keyword(s):  
Data Sharing ◽  
Data Sets ◽  
Surface Design ◽  
Trade Off ◽  
Shared Data ◽  
Risks And Benefits ◽  
Trade Offs ◽  
Different Types ◽  
Risk Visualization ◽  
Visualization Of Data

Enterprises share a wide variety of data with different partners. Tracking the risks and benefits of this data sharing is important for avoiding unwarranted risks of data exploitation. Data sharing risk can be characterized as a combination of trust in data sharing partners to not exploit shared data and the sensitivity, or potential for harm, of the data. Data sharing benefits can be characterized as the value likely to accrue to the enterprise from sharing the data by making the enterprise’s objectives more likely to succeed. We developed a risk visualization concept called a risk surface to support users monitoring for high risks and poor risk-benefit trade-offs. The risk surface design was evaluated in a series of two focus groups conducted with human factors professionals. Across the two studies, the design was improved and ultimately rated as highly useful. A risk surface needs to 1) convey which data, as joined data sets, are shared with which partners, 2) convey the degree of risk due to sharing that data, 3) convey the benefits of the data sharing and the trade-off between risk and benefits, and 4) be easy to scan at scale, since enterprises are likely to share many different types of data with many different partners.

scholarly journals Data protection by design: Building the foundations of trustworthy data sharing

Data & Policy ◽  
2020 ◽  
Vol 2 ◽  
Author(s):  
Sophie Stalla-Bourdillon ◽  
Gefion Thuermer ◽  
Johanna Walker ◽  
Laura Carmichael ◽  
Elena Simperl
Keyword(s):  
Organizational Structure ◽  
Data Sharing ◽  
Data Protection ◽  
Open Data ◽  
Design Approach ◽  
Core Data ◽  
Commercial Agreements

Abstract Data trusts have been conceived as a mechanism to enable the sharing of data across entities where other formats, such as open data or commercial agreements, are not appropriate, and make data sharing both easier and more scalable. By our definition, a data trust is a legal, technical, and organizational structure for enabling the sharing of data for a variety of purposes. The concept of the “data trust” requires further disambiguation from other facilitating structures such as data collaboratives. Irrespective of the terminology used, attempting to create trust in order to facilitate data sharing, and create benefit to individuals, groups of individuals, or society at large, requires at a minimum a process-based mechanism, that is, a workflow that should have a trustworthiness-by-design approach at its core. Data protection by design should be a key component of such an approach.

scholarly journals The Promotion of Data Sharing in Pharmacoepidemiology

2014 ◽  
Vol 21 (3) ◽  
pp. 271-296 ◽  
Author(s):  
Nayha Sethi
Keyword(s):  
Patient Safety ◽  
Data Sharing ◽  
Data Protection ◽  
Health Research ◽  
Crucial Role ◽  
Working Party ◽  
Data Reuse ◽  
European Data ◽  
Protection Legislation

This article addresses the role of pharmacoepidemiology in patient safety and the crucial role of data sharing in ensuring that such activities occur. Against the backdrop of proposed reforms of European data protection legislation, it considers whether the current legislative landscape adequately facilitates this essential data sharing. It is argued that rather than maximising and promoting the benefits of such activities by facilitating data sharing, current and proposed legislative landscapes hamper these vital activities. The article posits that current and proposed data protection approaches to pharmacoepidemiology — and more broadly, re-uses of data — should be reoriented towards enabling these important safety enhancing activities. Two potential solutions are offered: 1) a dedicated working party on data reuse for health research and 2) the introduction of new, dedicated legislation.

The European Union's Adequacy Approach to Privacy and International Data Sharing in Health Research

2016 ◽  
Vol 44 (1) ◽  
pp. 143-155 ◽  
Author(s):  
Jennifer Stoddart ◽  
Benny Chan ◽  
Yann Joly
Keyword(s):  
Data Sharing ◽  
Data Protection ◽  
Free Trade Agreement ◽  
Trade Agreement ◽  
The European Union ◽  
Economic Area ◽  
Data Protection Directive ◽  
International Data ◽  
Data Transfers ◽  
The Eu

The European Union (EU) approach to data protection consists of assessing the adequacy of the data protection offered by the laws of a particular jurisdiction against a set of principles that includes purpose limitation, transparency, quality, proportionality, security, access, and rectification. The EU's Data Protection Directive sets conditions on the transfer of data to third countries by prohibiting Member States from transferring to such countries as have been deemed inadequate in terms of the data protection regimes. In theory, each jurisdiction is evaluated similarly and must be found fully compliant with the EU's data protection principles to be considered adequate. In practice, the inconsistency with which these evaluations are made presents a hurdle to international data-sharing and makes difficult the integration of different data-sharing approaches; in the 20 years since the Directive was first adopted, the laws of only five countries from outside of the EU, Economic Area, or the European Free Trade Agreement have been deemed adequate to engage in data transfers without the need for further administrative safeguards.

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