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Mahsa Shabani from the Law Centre for Health and Life, together with Patricia Cervera De La Cruz, published a results of scoping review on the topic of fairness secondary uses of health data in Accountability in Reseach: Ethics, Integrity and Policy. This review shows that balancing individual and public interests, reducing power asymmetries, setting conditions for commercial involvement, and implementing benefit sharing are essential to guarantee fair secondary use research.

This paper investigates and clarifies the concept of fairness in the secondary use of health data for scientific research purposes, particularly within the context of the European Health Data Space (EHDS). By conducting a comprehensive scoping review of argument-based literature, this research seeks to shed light on the multifaceted nature of fairness in this domain. Through an inductive approach and thematic analysis, the paper identifies key elements of fairness, such as balancing individual and public interests, mitigating power imbalances, defining conditions for commercial involvement, and promoting benefit sharing. Ultimately, the paper aims to provide valuable insights that can inform current and future research practices and policy development, helping to ensure that the secondary use of health data is conducted ethically and fairly while maximizing its contributions to scientific research and healthcare enhancement. 

Dr. M. (Mahsa) Shabani PhD

Faculty of Law

Gezondheidsrecht