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Many Have It Wrong – Samples Do Contain Personal Data: The Data Protection Regulation as a Superior Framework to Protect Donor Interests in Biobanking and Genomic Research Vrije Universiteit Brussel
Genomic research relies on the availability of genomic data. Detached biological samples, stored in facilities known as biobanks, are the source of this data. Donors have interests in these samples. In particular, donors have interests in samples by virtue of the personal data they contain. In relation to this observation, this article puts forward three arguments. First: The current European legislative framework relating to samples is ...
Online price discrimination and personal data: A General Data Protection Regulation perspective KU Leuven
The General Data Protection Regulation (GDPR) contains various provisions with relevance to online price discrimination. This article, which analyses a number of essential elements on this junction, aims to provide a theory on whether, and, if so, how the GDPR affects price discrimination based on the processing of personal data. First, the contribution clarifies the concept of price discrimination, as well as its typology and relevance for big ...
Saving the web by decentralizing data networks? A socio-technical reflection on the promise of decentralization and personal data stores Universiteit Gent
In this article we elaborate on Personal Information Management Systems (PIMS) or Personal Data Stores (PDS) that provide a person with affordances for managing his/her personal data, giving him/her granular control over the data captured about him/her, and over how that data is shared and used. We examine the promise of PDS-enabled data cooperatives from a socio-technical approach by critically unpacking the current discourse on data activism ...
Personal Genomes in Practice: Exploring Citizen and Healthcare Professionals' Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design KU Leuven Universiteit Antwerpen Universiteit Hasselt
Ongoing health challenges, such as the increased global burden of chronic disease, are increasingly answered by calls for personalized approaches to healthcare. Genomic medicine, a vital component of these personalization strategies, is applied in risk assessment, prevention, prognostication, and therapeutic targeting. However, several practical, ethical, and technological challenges remain. Across Europe, Personal Health Data Space (PHDS) ...
Defining personal data transfers for the context of the General Data Protection Regulation Vrije Universiteit Brussel
On 18 November 2021, the European Data Protection Board (EDPB) published a piece of guidance that was supposed to clarify one of the ultimate mysteries of the General Data Protection Regulation (GDPR), namely the definition of international personal data transfers. The EDPB does clarify that for the assessment of an act as a transfer, the actors involved are important, thus it is only a transfer if data are exchanged between a (joint) controller ...
The EU-US Privacy Shield regime for cross-border transfers of personal data under the GDPR : What are the legal challenges and how might these affect cloud-based technologies, big data, and AI in the medical sector? Universiteit Gent
Cloud-based technologies, big data, statistical signal processing algorithms, and Artificial Intelligence (AI) technologies are expected to play an increasingly important role in the medical field. Big data and AI-technologies rely on the cloud for data storage as well as for computational power and thus need effective and robust legal frameworks for international data transfer. Because of inconsistent data protection regulations, this is not ...
How Uninformed is the Average Data Subject? A Quest for Benchmarks in EU Personal Data Protection Vrije Universiteit Brussel
Information obligations have always been crucial in personal data protection law. Reinforcing these obligations is one of the priorities of the legislative package introduced in 2012 by the European Commission to redefine the personal data protection legal landscape of the European Union (EU). Those responsible for processing personal data (the data controllers) must imperatively convey certain pieces of information to those whose data is ...