Genetic Data Privacy and ‘Legitimate Interest’ in Genetic Research: Is consent still a relevant narrative within the realm of big data research under the European data protection regime?

Bak, B. ORCID: https://orcid.org/0000-0003-2388-4796 (2024) Genetic Data Privacy and ‘Legitimate Interest’ in Genetic Research: Is consent still a relevant narrative within the realm of big data research under the European data protection regime? PhD thesis, University of Reading. doi: 10.48683/1926.00117717

Abstract/Summary

The processing of genetic data in scientific research delivers substantial benefits, striving for better well-being and healthcare for the public. The collection of genetic data stored in research repositories or biobanks for future research use, where researchers and research subjects do not engage, has become commonplace. However, the research use of genetic data also raises controversial questions regarding data protection. Genetic data uniquely distinguishes individuals from others and provides sensitive information about them and their relatives, concerning their current and future health status. Hence, its commercial misuse, leading to unethical discriminatory practices, and the reidentification of individuals must be prevented. This study aims to strike a balance between the public's interest in genetic research and the protection of genetic privacy, by focusing on the General Data Protection Regulation (GDPR). Specifically, it assesses the degree to which individual consent, one of the GDPR bases for justifying research and the traditional research method, can effectively establish this delicate balance. It argues that the legitimate interest ground, an alternative GDPR basis, offers certain advantages over consent and the public interest ground—another GDPR basis. Contrary to the dominant opinion, the legitimate interest basis may effectively establish an equilibrium between this public/private divergence for certain genetic research activities. This is a consequence of the shift towards big data research and contemporary dynamics in the biomedical field, and it occurs without necessarily compromising data protection principles and research ethics. The study introduces a novel perspective on genetic research, aiming to catalyse transformative changes in both legal frameworks and societal norms from a standpoint of solidarity. This unconventional approach is offered as a topic for further research.

Item Type	Thesis (PhD)
URI	https://reading-clone.eprints-hosting.org/id/eprint/117717
Identification Number/DOI	10.48683/1926.00117717
Divisions	Arts, Humanities and Social Science > School of Law
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