Literature DB >> 31377815

Big Data Governance Needs More Collective Responsibility: The Role of Harm Mitigation in the Governance of Data Use in Medicine and Beyond.

Aisling McMahon1, Alena Buyx2, Barbara Prainsack3.   

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 when they feel they were harmed by data use but do not qualify for legal remedies, or where 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 lawful and unlawful 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.
© The Author(s) 2019. Published by Oxford University Press.

Entities:  

Keywords:  Big Data; Biomedical data; Collective responsibility and oversight; Data governance; GDPR; Harm mitigation

Year:  2020        PMID: 31377815     DOI: 10.1093/medlaw/fwz016

Source DB:  PubMed          Journal:  Med Law Rev        ISSN: 0967-0742            Impact factor:   1.267


  4 in total

1.  Data Work: Meaning-Making in the Era of Data-Rich Medicine.

Authors:  Amelia Fiske; Barbara Prainsack; Alena Buyx
Journal:  J Med Internet Res       Date:  2019-07-09       Impact factor: 5.428

2.  The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study.

Authors:  Agata Ferretti; Marcello Ienca; Minerva Rivas Velarde; Samia Hurst; Effy Vayena
Journal:  J Empir Res Hum Res Ethics       Date:  2021-11-15       Impact factor: 1.742

3.  Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.

Authors:  Reinder Broekstra; Judith L Aris-Meijer; Els L M Maeckelberghe; Ronald P Stolk; Sabine Otten
Journal:  Eur J Hum Genet       Date:  2021-11-22       Impact factor: 4.246

Review 4.  Big Data and Digitalization in Dentistry: A Systematic Review of the Ethical Issues.

Authors:  Maddalena Favaretto; David Shaw; Eva De Clercq; Tim Joda; Bernice Simone Elger
Journal:  Int J Environ Res Public Health       Date:  2020-04-06       Impact factor: 3.390

  4 in total

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