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Accountability in Research
Article . 2023 . Peer-reviewed
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Conceptualizing fairness in the secondary use of health data for research: A scoping review

A scoping review
Authors: Cervera de la Cruz, Patricia; Shabani, Mahsa;

Conceptualizing fairness in the secondary use of health data for research: A scoping review

Abstract

With the introduction of the European Health Data Space (EHDS), the secondary use of health data for research purposes is set to rapidly escalate. Secondary health data processing promises to address novel research questions, inform the design of future research and improve healthcare delivery generally. To comply with the existing data protection regulations, the secondary data use must be fair to individuals, among other things. However, there is no clear understanding of what fairness means in the context of secondary use of health data for scientific research purposes. In response, we conducted a scoping review of argument-based literature to explore how fairness for the individuals in the secondary use of health data has been conceptualized. Our review has revealed that balancing individual and public interests, reducing power asymmetries, setting conditions for commercial involvement and implementing benefit sharing were essential to guarantee fair secondary use research for individuals. The findings of this review can inform current and future research practices and policy development in order to adequately address concerns about fairness in the secondary use of health data.

Countries
Belgium, Netherlands
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Keywords

PRIVACY, Fairness, Biomedical Research, BIG DATA, PUBLIC-INTEREST, data sharing, CONSENT, health data, secondary use, CARE, DUTY, health research, Research Design, SOLIDARITY, Medicine and Health Sciences, Humans, BROAD APPROACH, BENEFIT, ATTITUDES, Law and Political Science

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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
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