Big data governance needs more collective responsibility: The role of harm mitigation in the governance of data use in medicine and beyond

Aisling McMahon, Alena Buyx, Barbara Prainsack

Research output: Contribution to journalArticlepeer-review

37 Citations (Scopus)
149 Downloads (Pure)

Abstract

Harms arising from digital data use in the big data context are often systemic and cannot always be captured by linear cause and effect. Individual data subjects and third parties can bear the main downstream costs arising from increasingly complex forms of data uses – without being able to trace the exact data flows. Because current regulatory frameworks do not adequately address this situation, we propose a move towards harm mitigation tools to complement existing legal remedies. In this article, we make a normative and practical case for why individuals should be offered support in such contexts and how harm mitigation tools can achieve this. We put forward the idea of ‘Harm Mitigation Bodies’ (HMBs) which people could turn to who feel they were harmed by data use but do not qualify for legal remedies, or that existing legal remedies do not address their specific circumstances. HMBs would help to obtain a better understanding of the nature, severity, and frequency of harms occurring from both legal and illegal data use, and they could also provide financial support in some cases. We set out the role and form of these HMBs for the first time in this article.
Original languageEnglish
JournalMedical Law Review
Early online date4 Aug 2019
DOIs
Publication statusE-pub ahead of print - 4 Aug 2019

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