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Onderzoeker
Mahsa Shabani
Profiel
Projecten
Publicaties
Activiteiten
Prijzen & Erkenningen
67
Resultaten
2025
Conceptualizing fairness in the secondary use of health data for research : a scoping review
Patricia Cervera De La Cruz
Mahsa Shabani
A1
Artikel in een tijdschrift
in
ACCOUNTABILITY IN RESEARCH-ETHICS INTEGRITY AND POLICY
2025
Data altruism and the 'consent' question : a study into the 'consent' models used under the GDPR and how the data altruism mechanism can act as a potential solution for the research community in the reuse of health data
Maria Christofidou
Theodoros N. Arvanitis
Dipak Kalra
Nathan Lea
Mahsa Shabani
Pascal Coorevits
A1
Artikel in een tijdschrift
in
FRONTIERS IN MEDICINE
2025
2024
Conceptualizing fairness in the secondary use of health data for research : a scoping review
Patricia Cervera De La Cruz
Mahsa Shabani
C3
Conferentie
2024
Rationalizing patients : clinical decision support systems, patient decision aids and patient autonomy
Jasper Debrabander
Heidi Mertes
Tom Goffin
Mahsa Shabani
Proefschrift
2024
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.
A1
Artikel in een tijdschrift
in
EUROPEAN JOURNAL OF HUMAN GENETICS
2024
2023
Conceptualizing fairness in the secondary use of health data for research : a scoping review
Patricia Cervera De La Cruz
Mahsa Shabani
C3
Conferentie
2023
From collected stamps to hair locks : ethical and legal implications of testing DNA found on privately owned family artifacts
Kyle Mc Kibbin
Mahsa Shabani
Maarten Larmeseau
A1
Artikel in een tijdschrift
in
HUMAN GENETICS
2023
Genetic data sharing in the view of the EU general data protection regulation (GDPR)
Pieter De Smet
Mahsa Shabani
Hoofdstuk in een boek
in
Genomic data sharing : case studies, challenges, and opportunities for precision medicine
2023
Genomic data as a national strategic resource : implications for the genomic commons and international data sharing for biomedical research and innovation
Kyle McKibbin
Mahsa Shabani
A1
Artikel in een tijdschrift
in
JOURNAL OF LAW MEDICINE & ETHICS
2023
Reward systems for cohort data sharing : an interview study with funding agencies
Thijs Devriendt
Mahsa Shabani
Pascal Borry
A1
Artikel in een tijdschrift
in
PLOS ONE
2023
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.
Redactioneel materiaal
2023
2022
Building a better mobile app marketplace : a legal and governance toolkit for app mediated genomics research
Kyle Mc Kibbin
Mahsa Shabani
A1
Artikel in een tijdschrift
in
COMPUTER LAW & SECURITY REVIEW
2022
Credit and recognition for contributions to data-sharing platforms among cohort holders and platform developers in Europe : interview study
Thijs Devriendt
Pascal Borry
Mahsa Shabani
A1
Artikel in een tijdschrift
in
JOURNAL OF MEDICAL INTERNET RESEARCH
2022
Data sharing platforms : instruments to inform and shape science policy on data sharing?
Thijs Devriendt
Mahsa Shabani
Karim Lekadir
Pascal Borry
A1
Artikel in een tijdschrift
in
SCIENTOMETRICS
2022
Lawfulness in secondary use of health data
Mahsa Shabani
Muhammed Sami YILMAZ
A2
Artikel in een tijdschrift
in
TECHNOLOGY AND REGULATION
2022
Policies to regulate data sharing of cohorts via data infrastructures : an interview study with funding agencies
Thijs Devriendt
Mahsa Shabani
Pascal Borry
A1
Artikel in een tijdschrift
in
INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS
2022
Will the European Health Data Space change data sharing rules?
Mahsa Shabani
Redactioneel materiaal
2022
2021
An agenda-setting paper on data sharing platforms : euCanSHare workshop
Thijs Devriendt
Clemens Ammann
Folkert W. Asselberghs
Alexander Bernier
Rodrigo Costas
Matthias G. Friedrich
Josep L. Gelpi
Marjo-Riitta Jarvelin
Kari Kuulasmaa
Karim Lekadir
et al.
A2
Artikel in een tijdschrift
in
OPEN RESEARCH EUROPE
2021
Collection and sharing of genomic and health data for research purposes : going beyond data collection in traditional research settings
Mahsa Shabani
A2
Artikel in een tijdschrift
in
BIOLAW JOURNAL-RIVISTA DI BIODIRITTO
2021
Data Access Governance
Mahsa Shabani
Adrian Thorogood
Madeleine Murtagh
Hoofdstuk in een boek
in
The Cambridge handbook of health research regulation
2021
Data sharing in biomedical sciences : a systematic review of incentives
Thijs Devriendt
Mahsa Shabani
Pascal Borry
A1
Artikel in een tijdschrift
in
BIOPRESERVATION AND BIOBANKING
2021
Editorial: Personal genomes : accessing, sharing, and interpretation
Manuel Corpas
Stephan Beck
Gustavo Glusman
Mahsa Shabani
Redactioneel materiaal
2021
Ethics review of big data research : what should stay and what should be reformed?
Agata Ferretti
Marcello Ienca
Mark Sheehan
Alessandro Blasimme
Edward S. Dove
Bobbie Farsides
Phoebe Friesen
Jeff Kahn
Walter Karlen
Peter Kleist
et al.
A1
Artikel in een tijdschrift
in
BMC MEDICAL ETHICS
2021
Factors that influence data sharing through data sharing platforms : a qualitative study on the views and experiences of cohort holders and platform developers
Thijs Devriendt
Pascal Borry
Mahsa Shabani
A1
Artikel in een tijdschrift
in
PLOS ONE
2021
Het uitwisselen van onderzoeksgegevens : belangen en barrières
Thijs Devriendt
Mahsa Shabani
Pascal Borry
A2
Artikel in een tijdschrift
in
TIJDSCHRIFT VOOR GENEESKUNDE
2021
Public involvement in the governance of populationlevel biomedical research : unresolved questions and future directions
Sonja Erikainen
Phoebe Friesen
Leah Rand
Karin Jongsma
Michael Dunn
Annie Sorbie
Matthew McCoy
Jessica Bell
Michael Burgess
Haidan Chen
et al.
A1
Artikel in een tijdschrift
in
JOURNAL OF MEDICAL ETHICS
2021
The Data Governance Act and the EU's move towards facilitating data sharing
Mahsa Shabani
Redactioneel materiaal
2021
The impact of the GDPR on the governance of biobank research
Mahsa Shabani
Gauthier Chassang
Luca Marelli
Hoofdstuk in een boek
in
GDPR and biobanking : individual rights, public interest and research regulation across Europe
2021
Toward better governance of human genomic data
Kieran C. O’Doherty
Mahsa Shabani
Edward S. Dove
Heidi Beate Bentzen
Pascal Borry
Michael M. Burgess
Don Chalmers
Jantina De Vries
Lisa Eckstein
Stephanie M. Fullerton
et al.
Redactioneel materiaal
2021
2020
Data sharing platforms and the academic evaluation system
Thijs Devriendt
Mahsa Shabani
Pascal Borry
Redactioneel materiaal
2020
Genomic sequencing capacity, data retention, and personal access to raw data in Europe
Shaman Narayanasamy
Varvara Markina
Adrian Thorogood
Adriana Blazkova
Mahsa Shabani
Bartha M. Knoppers
Barbara Prainsack
Robert Koesters
A1
Artikel in een tijdschrift
in
Frontiers in Genetics
2020
Implications of secondary findings in clinical context
Michael Morrison
Harriet Teare
Gabriella Bertier
James Buchanan
Yasmin Bylstra
Clara Gaff
Leigh Jackson
Kazuto Kato
Elke Kaufmann
Susan Kelly
et al.
Hoofdstuk in een boek
in
Secondary findings in genomic research
2020
Juridisch onderzoek gegevensbeheer Zorginspectie
Lisse Van Acker
Tim Opgenhaffen
Eva Lievens
Johan Put
Mahsa Shabani
Verslag
2020
Reporting, recording, and communication of COVID-19 cases in workplace : data protection as a moving target
Mahsa Shabani
Tom Goffin
Heidi Mertes
Redactioneel materiaal
2020
Review of policies of companies and databases regarding access to customers' genealogy data for law enforcement purposes
Sevasti Skeva
Maarten H. D. Larmuseau
Mahsa Shabani
A1
Artikel in een tijdschrift
in
PERSONALIZED MEDICINE
2020
2019
Are requirements to deposit data in research repositories compatible with the European Union's general data protection regulation?
Deborah Mascalzoni
Heidi Beate Bentzen
Isabelle Budin-Ljøsne
Lee Andrew Bygrave
Jessica Bell
Edward S. Dove
Christian Fuchsberger
Kristian Hveem
Michaela Th. Mayrhofer
Viviana Meraviglia
et al.
Redactioneel materiaal
2019
Blockchain-based platforms for genomic data sharing : a de-centralized approach in response to the governance problems?
Mahsa Shabani
A1
Artikel in een tijdschrift
in
JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION
2019
Consent insufficient for data release
Dianne Nicol
Lisa Eckstein
Heidi Beate Bentzen
Pascal Borry
Mike Burgess
Wylie Burke
Don Chalmers
Mildred Cho
Edward Dove
Stephanie Fullerton
et al.
A1
Artikel in een tijdschrift
in
SCIENCE
2019
DNA data marketplace : an analysis of the ethical concerns regarding the participation of the individuals
Eman Ahmed
Mahsa Shabani
A1
Artikel in een tijdschrift
in
FRONTIERS IN GENETICS
2019
Governance of collection, use and storage of RWD in the view of data protection concerns
Mahsa Shabani
C3
Conferentie
2019
Model consent clauses for rare disease research
Minh Thu Nguyen
Jack Goldblatt
Rosario Isasi
Marlene Jagut
Anneliene Hechtelt Jonker
Petra Kautmann
Laetitia Ouillade
Fruszina Molnar-Gabor
Mahsa Shabani
Eric Sid
et al.
A1
Artikel in een tijdschrift
in
BMC MEDICAL ETHICS
2019
Re‐identifiability of genomic data and the GDPR : assessing the re‐identifiability of genomic data in light of the EU general Data Protection Regulation
Mahsa Shabani
Luca Marelli
Redactioneel materiaal
2019
The use of samples originating from doping control procedures for research purposes : a qualitative study
Thijs Devriendt
Amicia Phillips
Mahsa Shabani
Pascal Borry
A1
Artikel in een tijdschrift
in
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
2019
Transparency and objectivity in governance of clinical trials data sharing : current practices and approaches
Mahsa Shabani
Mojisola Obasa
A1
Artikel in een tijdschrift
in
CLINICAL TRIALS
2019
2018
Forensic epigenetic age estimation and beyond : ethical and legal considerations
Mahsa Shabani
Pascal Borry
Inge Smeers
Bram Bekaert
Redactioneel materiaal
2018
Registered access : authorizing data access
Stephanie O. M. Dyke
Mikael Linden
Ilkka Lappalainen
Jordi Rambla De Argila
Knox Carey
David Lloyd
J. Dylan Spalding
Moran N. Cabili
Giselle Kerry
Julia Foreman
et al.
A1
Artikel in een tijdschrift
in
EUROPEAN JOURNAL OF HUMAN GENETICS
2018
The challenges of the expanded availability of genomic information : an agenda-setting paper
Pascal Borry
Heidi Beate Bentzen
Isabelle Budin-Ljøsne
Martina C. Cornel
Heidi Carmen Howard
Oliver Feeney
Leigh Jackson
Deborah Mascalzoni
Álvaro Mendes
Borut Peterlin
et al.
A2
Artikel in een tijdschrift
in
JOURNAL OF COMMUNITY GENETICS
2018
Umbilical cord blood banking, research and clinical applications : report and recommendations
Rosarie Isasi
Bartha Knoppers
Pascal Borry
Mahsa Shabani
Herman Nys
Verslag
2018
Variant data sharing by clinical laboratories through public databases : consent, privacy and further contact for research policies
Mahsa Shabani
Stephanie O. M. Dyke
Luca Marelli
Pascal Borry
A1
Artikel in een tijdschrift
in
GENETICS IN MEDICINE
2018
2017
Genetic testing in Europe : an overview of the legal framework
Dominique Sprumont
Pascal Borry
Mahsa Shabani
Hoofdstuk in een boek
in
European health law
2017
Oversight of genomic data sharing : what roles for ethics and data access committees?
Mahsa Shabani
Edward Dove
Madeleine Murtagh
Bartha Knoppers
Pascal Borry
A1
Artikel in een tijdschrift
in
BIOPRESERVATION AND BIOBANKING
2017
Raw genomic data : storage, access, and sharing
Mahsa Shabani
Danya Vears
Pascal Borry
Redactioneel materiaal
2017
Research ethics review for the use of anonymized samples and data : a systematic review of normative documents
Amicia Phillips
Pascal Borry
Mahsa Shabani
A1
Artikel in een tijdschrift
in
ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE
2017
Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation
Mahsa Shabani
Pascal Borry
A1
Artikel in een tijdschrift
in
EUROPEAN JOURNAL OF HUMAN GENETICS
2017
2016
'You want the right amount of oversight' : interviews with data access committee members and experts on genomic data access
Mahsa Shabani
Pascal Borry
A1
Artikel in een tijdschrift
in
GENETICS IN MEDICINE
2016
Registered access : a ‘Triple-A’ approach
Stephanie O M Dyke
Emily Kirby
Mahsa Shabani
Adrian Thorogood
Kazuto Kato
Bartha M Knoppers
A1
Artikel in een tijdschrift
in
EUROPEAN JOURNAL OF HUMAN GENETICS
2016
Research ethics : ethics review for international data-intensive research : ad hoc approaches mix and match existing components
E. S. Dove
D. Townend
E. M. Meslin
M. Bobrow
K. Littler
D. Nicol
J. de Vries
A. Junker
C. Garattini
J. Bovenberg
et al.
Redactioneel materiaal
2016
Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts
Mahsa Shabani
Adrian Thorogood
Pascal Borry
A1
Artikel in een tijdschrift
in
EUROPEAN JOURNAL OF HUMAN GENETICS
2016
2015
Challenges of web-based personal genomic data sharing
Mahsa Shabani
Pascal Borry
A2
Artikel in een tijdschrift
in
LIFE SCIENCE, SOCIETY AND POLICY
2015
Compendium of policy and ethical framework Umbilical Cord Blood (UCB) : banking, research and clinical Applications
Rosarie Isasi
Bartha Knoppers
Pascal Borry
Mahsa Shabani
Herman Nys
Verslag
2015
Controlled access under review : improving the governance of genomic data access
Mahsa Shabani
Stephanie O. M. Dyke
Yann Joly
Pascal Borry
A1
Artikel in een tijdschrift
in
PLOS BIOLOGY
2015
From the principles of genomic data sharing to the practices of data access committees
Mahsa Shabani
Bartha Maria Knoppers
Pascal Borry
Redactioneel materiaal
2015
Genomic databases, access review, and data access committees
Mahsa Shabani
Bartha Knoppers
Pascal Borry
Hoofdstuk in een boek
in
Medical and Health Genomics
2015
2014
A review of the key issues associated with the commercialization of biobanks
Timothy Caulfield
Sarah Burningham
Yann Joly
Zubin Master
Mahsa Shabani
Pascal Borry
Allan Becker
Michael Burgess
Kathryn Calder
Christine Critchley
et al.
A1
Artikel in een tijdschrift
in
JOURNAL OF LAW AND THE BIOSCIENCES
2014
Attitudes of research participants and the general public towards genomic data sharing : a systematic literature review
Mahsa Shabani
Louize Bezuidenhout
Pascal Borry
A1
Artikel in een tijdschrift
in
EXPERT REVIEW OF MOLECULAR DIAGNOSTICS
2014
Is there a right time to know? The right not to know and genetic testing in children
Pascal Borry
Mahsa Shabani
Heidi Howard
A2
Artikel in een tijdschrift
in
JOURNAL OF LAW, MEDICINE AND ETHICS
2014
2013
Nonpropositional content in direct-to-consumer genetic testing advertisements
Pascal Borry
Mahsa Shabani
Heidi Howard
Redactioneel materiaal
2013