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The SARS-CoV-2 pandemic is a public health challenge of unprecedented scale. In the midst of the first wave of the pandemic, governments worldwide introduced digital contact tracing systems as part of a strategy to contain the spread of the virus. In Europe, after intense discussion about privacy-related risks involving policymakers, technology experts, information technology companies, and—albeit to a limited extent—the public at large, technical protocols were created to support the development of privacy-compatible proximity tracing apps. However, as the second wave of SARS-CoV-2 sweeps the continent, digital contact tracing in Europe is evolving in terms of both technological and governance features. To enable policymakers to harness the full potential of digital health tools against SARS-CoV-2, this paper examines the evolution of digital contact tracing in eight European countries. Our study highlights that while privacy and data protection are at the core of contact tracing apps in Europe, countries differ in their technical protocols, and in their capacity to utilize collected data beyond proximity tracing alone. In particular, the most recently released apps tend to offer users more granular information about risk in specific locations, and to collect data about user whereabouts, in order to enhance retrospective contact tracing capacity. These developments signal a shift from a strict interpretation of data minimization and purpose limitation toward a more expansive approach to digital contact tracing in Europe, calling for careful scrutiny and appropriate oversight., Frontiers in Digital Health, 3, ISSN:2673-253X

The health sector is undergoing a digital revolution. Digital technologies monitor and capture data about people’s health and physiology. The widespread availability of digital technologies and powerful analytical tools - such as artificial intelligence (AI) algorithms – makes it possible to generate, store, share and analyze vast amounts of aggregated data – “big data”. Big data offers exciting opportunities to improve prevention, diagnostics and therapeutics. Despite its benefits however, big data and AI-enabled technologies come with a series of technical, legal and methodological challenges which have ethical implications including privacy, equity, fairness, accountability, risk assessment, and benefit distribution. Given these novel ethical implications, the existing ethical guidance and oversight mechanisms are inadequate to effectively regulate big data use and health technology development. The first part of this thesis aims to gain a deeper insight into the ethical implications of big data and AI-enabled technologies in the health sector – specifically in health research and digital health applications. This analysis informs the second part of the thesis, which aims to determine the current state of ethical oversight mechanisms in health research and health apps in respect to big data. This goal will be achieved by mapping gaps in the existing ethical guidelines to suggest key reforms and future recommendations. The findings of this thesis show that the ethical discourse is biased toward privacy and technical concerns, leaving other ethical considerations unexamined. This narrow perspective is also reflected in the lack of comprehensive governance and adequate oversight to ensure an ethically aligned use of data in health research and health app development. The focus on data security compliance may result in insufficient guidance for stakeholders to make ethical choices, and thus may cause individual and collective harms. To avoid this risk, this thesis recommends updating the existing data governance and oversight mechanisms, considering a more comprehensive and robust ethical approach, which promotes shared values beyond data protection. Furthermore, this thesis includes an ethical toolkit that can guide stakeholders toward the ethically aligned use of big data. Only within good and ethical governance, big data and AI will be able to unlock their full potential for benefit to the health sector.

Supplemental material, sj-docx-1-jre-10.1177_15562646211053538 for The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study by Agata Ferretti, Marcello Ienca, Minerva Rivas Velarde, Samia Hurst and Effy Vayena in Journal of Empirical Research on Human Research Ethics

The implementation of the General Data Protection Regulation (GDPR) raises a series of challenges for scientific research, in particular for research that is dependent on data. This study comprehensively investigates the promises and challenges associated with the implementation of the GDPR in the scientific domain, with a special focus on the impact of the new rights and obligations enshrined in the GDPR on the design and conduct of scientific research. Furthermore, the study examines the adequacy of the GDPR's derogations for scientific research in terms of safeguarding scientific freedom and technological progress. The study also provides policy options that delineate a pathway towards enhancing rather than stifling research, and facilitating privacy-preserving data-driven research under the provisions of the GDPR.

PLoS ONE, 13 (10), ISSN:1932-6203

European Data Protection Law Review, 4 (3)

Journal of Cognitive Enhancement, 2 (4), ISSN:2509-3290, ISSN:2509-3304

Background The advent of mobile applications for health and medicine will revolutionize travel medicine. Despite their many benefits, such as access to real-time data, mobile apps for travel medicine are accompanied by many ethical issues, including questions about security and privacy. Methods A systematic literature review as conducted following PRISMA guidelines. Database screening yielded 1795 results and seven papers satisfied the criteria for inclusion. Through a mix of inductive and deductive data extraction, this systematic review examined both the benefits and challenges, as well as ethical considerations, of mobile apps for travel medicine. Results Ethical considerations were discussed with varying depth across the included articles, with privacy and data protection mentioned most frequently, highlighting concerns over sensitive information and a lack of guidelines in the digital sphere. Additionally, technical concerns about data quality and bias were predominant issues for researchers and developers alike. Some ethical issues were not discussed at all, including equity, and user involvement. Conclusion This paper highlights the scarcity of discussion around ethical issues. Both researchers and developers need to better integrate ethical reflection at each step of the development and use of health apps. More effective oversight mechanisms and clearer ethical guidance are needed to guide the stakeholders in this endeavour.