Posts

Technical and legal aspects of privacy-preserving services: the case of health data

Nowadays, the potential usefulness as well as the value of health data are broadly recognized. They may transform traditional medicine into clinical science intertwined with data research, driving innovation and producing value from the perspective of the key stakeholders of the health care ecosystem: not only patients but also health care providers and the life insurance sector.

Yet, the health data does not appear out of thin air, it is not a product that can be viewed in isolation. It is:

  • the personal data related to the physical or mental health of a natural person, including the provision of health care services, which reveal information about his or her health status (data concerning health),
  • the personal data relating to the inherited or acquired genetic characteristics of a natural person which give unique information about the physiology or the health of that natural person and which result, in particular, from an analysis of a biological sample from the natural person in question (genetic data),
  • the personal data resulting from specific technical processing relating to the physical, physiological or behavioural characteristics of a natural person, which allow or confirm the unique identification of that natural person, such as facial images or dactyloscopic data (biometric data).

Thus, the individual cannot be deprived of the right to decide about their processing as the health issues are at the very centre of the privacy protection sphere.

It becomes clear that balancing the interests of the private individual whose privacy is protected, interests of other private and public actors, and general common interests is highly problematic. Naturally, processing of the health data cannot be unrestricted: optimally, the legal framework should facilitate unlocking the value of health data for European citizens and businesses and empower users in the management of their own health data without undermining the very essence of the right to privacy.

Currently, processing of health data falls under complex GDPR legal regime. This, however, poses a serious challenge for the data processors on the one hand and, on the other, gives rise to numerous legal questions. What are the grounds for processing such data in this highly differentiated context?  How should medical data be protected both on the regulatory and technological level? How can we harness newest technology to increase data safety? How can anonymization and/or privacy-preserving data management techniques using efficient cryptography (e.g. homomorphic, secure multi-party computations) contribute to reaching higher protection levels without becoming a hurdle or an impediment for legitimate data processing? Can the blockchain technologies be used for health information exchange? Should the creation of technological infrastructure be coupled with establishing proper key management schemes?

The task is twofold. First, on the regulatory level general policy guidelines for legislators, independent agencies, businesses on data sharing platforms are necessary, together with the analysis of the policy and market implications of providing privacy-preserving services. Second, the practical recommendations are needed: specific postulates should be formulated on how data protection techniques can be applied in the health domain, in order to contribute to achieving the abovementioned aims.

Author: dr. Katarzyna Południak-Gierz, Jagiellonian University

The beginning of the LeADS era

On January 1st 2021 LeADS (Legality Attentive Data Scientists) started its journey. A Consortium of 7 prominent European universities and research centres along with 6 important industrial partners and 2 Supervisory Authorities is exploring ways to create a new generation of LEgality Attentive Data Scientists while investigating the interplay between and across many sciences.

LeADS envisages a research and training programme that will blend ground-breaking applied research and pragmatic problem-solving from the involved industries, regulators, and policy makers. The skills produced by LeADS and tested by the ESR will be able to tackle the confusion created by the blurred borders between personal and commercial information and between personality and property rights typical of the big data environment. Both processes constitute a silent revolution—developed by new digital business models, industrial standards, and customs—that is already embedded in soft law instruments (such as stakeholders’ agreements) and emerging in case law and legislation (Regulation EU 2016/679 and the e-privacy directive to begin with), while data scientists are mostly unaware of them. They cut across the emergence of the Digital Transformation, and call for a more comprehensive and innovative regulatory framework. Against this background, LeADS is animated by the idea that in the digital economy data protection holds the keys for both protecting fundamental rights and fostering the kind of competition that will sustain the growth and “completion” of the “Digital Single Market” and the competitive ability of European businesses outside the EU. Under LeADS, the General Data Protection Regulation (GDPR) and other EU rules will dictate the transnational standard for the global data economy while training researchers able to drive the process and set an example

The data economy or better way the data society we increasingly live is our explorative target under many angles (from the technological to the legal and ethics one). This new generation is needed to better answer to the challenges of the data economy and the unfolding of the digital transformation scoping. Our Early Stage Researchers (ESRs) will come from many experiences and backgrounds (law, computer science, economics, statistics, management, engineering, policy studies, and mathematics,..).

ESRs will find an enthusiastic transnational, interdisciplinary team of teams tackling the relevant issues from their many angles. Their research will be supported by these research teams in setting the theoretical framework and the practical implementation template of a common language.

LeADS research plan, although already envisages 15 specific topics to be interdisciplinary investigated, remain open-ended.

It is natural in the fields we have selected for which we identified crossover concepts in need of a common understanding of concepts useful for future researchers, policy makers, software developers, lawyers and market actors.

LeADS research strives to create, share cross disciplinary languages and integrate the respective background domain knowledge of its participants in one shared idiolect that it wants to share with a wider audience.

It is LeADS understanding that regulatory issues in data science and AI development and deployment are often perceived (and sometimes are) hurdles to innovation, markets and above all research. Our unwritten goal is to contribute to turn regulatory and ethical constraints which are needed in opportunities for better developments.

LADS aims at nurturing a data science capable of maintaining its innovative solutions within the borders of law – by design and by default – and of helping expand the legal frontiers in line with innovation needs, preventing the enactments of legal rules technologically unattainable.

By Giovanni Comandé