EDPL - European Data Protection Law Review

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Gauthier Chassang, Lisa Feriol

European Data Protection Law Review, Volume 10 (2024), Issue 1, Page 57 - 68

The article explores the challenges in implementing data altruism, focusing on personal health data altruism for scientific research purposes. The analysis highlights conceptual gaps and lack of clarity of the Data Governance Act (DGA) provisions and their unclear interplay with the General Data Protection Regulation (GDPR). Ethical considerations regarding the relationship between altruism and solidarity-based systems are discussed, along with legal issues surrounding the scope of data altruism and consent requirements in different scenarios of personal health data altruism for scientific research. The discussion extends to existing opt-out practices in scientific research and their recognition, pointing out potential drawbacks of an overly restrictive emphasis on consent in the context of data altruism. The conclusion highlights the conceptual and ethical shortcomings of data altruism, advocates for the development of an integrative approach to altruism within the regulatory sphere and within health data-sharing organisations for encouraging collaboration and recognition of contributors to not-for-profit research in the public interest. Ultimately, the article supports the development of new approaches to participation in research through dynamic opt-out mechanisms in health systems and emphasises the need for clearer regulatory guidance to unlock the full potential of health data altruism. Keywords: data altruism; personal health data; scientific research; Data Governance Act; DGA

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