دورية أكاديمية
Towards trust-based governance of health data research.
| العنوان: | Towards trust-based governance of health data research. |
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| المؤلفون: | Bak MAR; Department of Ethics, Law and Humanities, Amsterdam UMC (Location AMC), University of Amsterdam, Meibergdreef 15, 1105 AZ, Amsterdam, The Netherlands. marieke.bak@amsterdamumc.nl., Ploem MC; Department of Ethics, Law and Humanities, Amsterdam UMC (Location AMC), University of Amsterdam, Meibergdreef 15, 1105 AZ, Amsterdam, The Netherlands., Tan HL; Department of Cardiology, Amsterdam UMC (Location AMC), University of Amsterdam, Amsterdam, The Netherlands.; Netherlands Heart Institute, Utrecht, The Netherlands., Blom MT; Department of Cardiology, Amsterdam UMC (Location AMC), University of Amsterdam, Amsterdam, The Netherlands., Willems DL; Department of Ethics, Law and Humanities, Amsterdam UMC (Location AMC), University of Amsterdam, Meibergdreef 15, 1105 AZ, Amsterdam, The Netherlands. |
| المصدر: | Medicine, health care, and philosophy [Med Health Care Philos] 2023 Jun; Vol. 26 (2), pp. 185-200. Date of Electronic Publication: 2023 Jan 12. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: Kluwer Academic Publishers Country of Publication: Netherlands NLM ID: 9815900 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1572-8633 (Electronic) Linking ISSN: 13867423 NLM ISO Abbreviation: Med Health Care Philos Subsets: MEDLINE |
| أسماء مطبوعة: | Original Publication: Dordrecht ; Boston : Kluwer Academic Publishers, c1998- |
| مواضيع طبية MeSH: | Trust*, Humans ; Europe ; Privacy |
| مستخلص: | Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research ecosystem; while harmonisation across Europe and data sharing between countries is hampered by different interpretations of the law, which partly stem from different views about ethical values. Then, building on these observations, we use theory to argue that the concept of trust provides an escape from the privacy-solidarity debate. Lastly, the paper details three aspects of trust that can help to create a responsible research environment and to mitigate the encountered challenges: trust as multi-agent concept; trust as a rational and democratic value; and trust as method for priority setting. Mutual cooperation in research-among researchers and with data subjects-is grounded in trust, which should be more explicitly recognised in the governance of health data research. (© 2023. The Author(s).) |
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| معلومات مُعتمدة: | 733381 horizon 2020 framework programme |
| فهرسة مساهمة: | Keywords: Big data; Data sharing; ESCAPE-NET; GDPR; Governance; Privacy; Research ethics; Solidarity; Trust |
| تواريخ الأحداث: | Date Created: 20230112 Date Completed: 20230516 Latest Revision: 20231101 |
| رمز التحديث: | 20231101 |
| مُعرف محوري في PubMed: | PMC9835739 |
| DOI: | 10.1007/s11019-022-10134-8 |
| PMID: | 36633724 |
| قاعدة البيانات: | MEDLINE |
Find this article in full text from Springer Verlag. 
Full Text Finder | تدمد: | 1572-8633 |
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| DOI: | 10.1007/s11019-022-10134-8 |