Ghent University Academic Bibliography

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Journal Article
A1
open access

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

Patricia Cervera De La Cruz (UGent) and Mahsa Shabani (UGent)

(2025) ACCOUNTABILITY IN RESEARCH-ETHICS INTEGRITY AND POLICY. p.1-30

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Conference Paper
C3
open access

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

Patricia Cervera De La Cruz (UGent) and Mahsa Shabani (UGent)

(2024) Research Day Law and Criminology 2024.

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Journal Article
A1
open access

Reconciling the biomedical data commons and the GDPR : three lessons from the EUCAN ELSI collaboratory

Alexander Bernier, Fruzsina Molnár-Gábor, Bartha M. Knoppers, Pascal Borry, Priscilla M. D. G. Cesar, Thijs Devriendt, Melanie Goisauf, Madeleine Murtagh, Pilar Nicolás Jiménez, Mikel Recuero, et al.

(2024) EUROPEAN JOURNAL OF HUMAN GENETICS. 32. p.69-76

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PhD Thesis

Rationalizing patients : clinical decision support systems, patient decision aids and patient autonomy

Jasper Debrabander (UGent)

(2024)

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Genomic data as a national strategic resource : implications for the genomic commons and international data sharing for biomedical research and innovation

Kyle McKibbin and Mahsa Shabani (UGent)

(2023) JOURNAL OF LAW MEDICINE & ETHICS. 51(2). p.301-313

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Conference Paper
C3
open access

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

Patricia Cervera De La Cruz (UGent) and Mahsa Shabani (UGent)

(2023) Research Day Law and Criminology 2023.

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Book Chapter

Genetic data sharing in the view of the EU general data protection regulation (GDPR)

Pieter De Smet and Mahsa Shabani (UGent)

(2023) Genomic data sharing : case studies, challenges, and opportunities for precision medicine. p.171-187

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Miscellaneous
open access

The European health data space : too big to succeed?

Luca Marelli, Marthe Stevens, Tamar Sharon, Ine Van Hoyweghen, Martin Boeckhout, Ilaria Colussi, Alexander Degelsegger-Márquez, Seliem El-Sayed, Klaus Hoeyer, Robin van Kessel, et al.

(2023) HEALTH POLICY. 135.

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Journal Article
A1
open access

Reward systems for cohort data sharing : an interview study with funding agencies

Thijs Devriendt, Mahsa Shabani (UGent) and Pascal Borry

(2023) PLOS ONE. 18(3).

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From collected stamps to hair locks : ethical and legal implications of testing DNA found on privately owned family artifacts

Kyle Mc Kibbin (UGent) , Mahsa Shabani (UGent) and Maarten Larmeseau

(2023) HUMAN GENETICS. 142(3). p.331-341

Academic Bibliography

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

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

Reconciling the biomedical data commons and the GDPR : three lessons from the EUCAN ELSI collaboratory

Rationalizing patients : clinical decision support systems, patient decision aids and patient autonomy

Genomic data as a national strategic resource : implications for the genomic commons and international data sharing for biomedical research and innovation

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

Genetic data sharing in the view of the EU general data protection regulation (GDPR)

The European health data space : too big to succeed?

Reward systems for cohort data sharing : an interview study with funding agencies

From collected stamps to hair locks : ethical and legal implications of testing DNA found on privately owned family artifacts

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