Research Explorer

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Researcher

Mahsa Shabani

Publications & Research Data

Awards & Distinctions

77 Results

2026

Anonymization, accountability, and access : legal dimensions of health data sharing in federated networks : perspectives from empirical study

Magdalena Kogut-CzarkowskaMahsa Shabani

A2 Journal Article in FRONTIERS IN DIGITAL HEALTH

Driving AI health innovation through the European Health Data Space : opportunities and challenges for non-EU country participation

Patricia Cervera De La CruzJames W. HazelMahsa ShabaniI. Glenn Cohen

A2 Journal Article in NEW ENGLAND JOURNAL OF MEDICINE ARTIFICIAL INTELLIGENCE

The European Health Data Space : an opportunity to strengthen citizen rights and engage citizens in health data governance

Patricia Cervera De La CruzTeodora Lalova-SpinksMahsa Shabani

A1 Journal Article in FRONTIERS IN MEDICINE

2025

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

Patricia Cervera De La CruzMahsa Shabani

A1 Journal Article in ACCOUNTABILITY IN RESEARCH-ETHICS INTEGRITY AND POLICY

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 ChristofidouTheodoros N. ArvanitisDipak KalraNathan LeaMahsa ShabaniPascal Coorevits

A1 Journal Article in FRONTIERS IN MEDICINE

Emerging and evolving values in the changing landscape of genomics

Maria SiermannRiya MohanEline M. BunnikAnne Cambon-ThomsenRuth ChadwickMartina C. CornelJohannes J. M. van DeldenYann JolyFruzsina Molnár-GáborMaria Pilar Nicolás Jiménez et al.

A1 Journal Article in FRONTIERS IN GENETICS

Fair enough? Exploring the role of fairness in secondary uses of health data in the European Health Data Space

Patricia Cervera De La CruzMahsa Shabani

Bookchapter in The European Health Data Space : examining a new era in data protection

Federated networks and secondary uses of health data

Magdalena Kogut-CzarkowskaMahsa Shabani

Bookchapter in The European Health Data Space : examining a new era in data protection

FUTURE-AI : international consensus guideline for trustworthy and deployable artificial intelligence in healthcare

Karim LekadirAlejandro F FrangiAntonio R PorrasBen GlockerCelia CintasCurtis P LanglotzEva WeickenFolkert W AsselbergsFred PriorGary S Collins et al.

A1 Journal Article in BMJ-BRITISH MEDICAL JOURNAL

Implementation of the European Health Data Space : a qualitative study on expectations of health data experts from 23 countries

Patricia Cervera De La CruzTeodora Lalova-SpinksMahsa Shabani

A1 Journal Article in HEALTH POLICY

The European Health Data Space : examining a new era in data protection

2024

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

Jasper DebrabanderHeidi MertesTom GoffinMahsa Shabani

Reconciling diversity in health and genomic data collection with the regulation of AI in clinical genomics

Kyle J. McKibbinAlice B. PopejoyMahsa Shabani

Editorial material

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

Alexander BernierFruzsina Molnár-GáborBartha M. KnoppersPascal BorryPriscilla M. D. G. CesarThijs DevriendtMelanie GoisaufMadeleine MurtaghPilar Nicolás JiménezMikel Recuero et al.

A1 Journal Article in EUROPEAN JOURNAL OF HUMAN GENETICS

2023

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

Patricia Cervera De La CruzMahsa Shabani

Crowdsourcing smartphone data for biomedical research : ethical and legal questions

Michael LangKyle McKibbinMahsa ShabaniPascal BorryVincent GautraisKamiel VerbekeMa’n H. Zawati

A1 Journal Article in DIGITAL HEALTH

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

Kyle Mc KibbinMahsa ShabaniMaarten Larmeseau

A1 Journal Article in HUMAN GENETICS

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

Pieter De SmetMahsa Shabani

Bookchapter in Genomic data sharing : case studies, challenges, and opportunities for precision medicine

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

Kyle Mc KibbinMahsa Shabani

A1 Journal Article in JOURNAL OF LAW MEDICINE & ETHICS

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

Thijs DevriendtMahsa ShabaniPascal Borry

A1 Journal Article in PLOS ONE

The European health data space : too big to succeed?

Luca MarelliMarthe StevensTamar SharonIne Van HoyweghenMartin BoeckhoutIlaria ColussiAlexander Degelsegger-MárquezSeliem El-SayedKlaus HoeyerRobin van Kessel et al.

Editorial material

2022

Building a better mobile app marketplace : a legal and governance toolkit for app mediated genomics research

Kyle Mc KibbinMahsa Shabani

A1 Journal Article in COMPUTER LAW & SECURITY REVIEW

Credit and recognition for contributions to data-sharing platforms among cohort holders and platform developers in Europe : interview study

Thijs DevriendtPascal BorryMahsa Shabani

A1 Journal Article in JOURNAL OF MEDICAL INTERNET RESEARCH

Data sharing platforms : instruments to inform and shape science policy on data sharing?

Thijs DevriendtMahsa ShabaniKarim LekadirPascal Borry

A1 Journal Article in SCIENTOMETRICS

Lawfulness in secondary use of health data

Mahsa ShabaniMuhammed Sami YILMAZ

A2 Journal Article in TECHNOLOGY AND REGULATION

Policies to regulate data sharing of cohorts via data infrastructures : an interview study with funding agencies

Thijs DevriendtMahsa ShabaniPascal Borry

A1 Journal Article in INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS

Will the European Health Data Space change data sharing rules?

Editorial material

2021

An agenda-setting paper on data sharing platforms : euCanSHare workshop

Thijs DevriendtClemens AmmannFolkert W. AsselberghsAlexander BernierRodrigo CostasMatthias G. FriedrichJosep L. GelpiMarjo-Riitta JarvelinKari KuulasmaaKarim Lekadir et al.

A2 Journal Article in OPEN RESEARCH EUROPE

Collection and sharing of genomic and health data for research purposes : going beyond data collection in traditional research settings

A2 Journal Article in BIOLAW JOURNAL-RIVISTA DI BIODIRITTO

Data Access Governance

Mahsa ShabaniAdrian ThorogoodMadeleine Murtagh

Bookchapter in The Cambridge handbook of health research regulation

Data sharing in biomedical sciences : a systematic review of incentives

Thijs DevriendtMahsa ShabaniPascal Borry

A1 Journal Article in BIOPRESERVATION AND BIOBANKING

Editorial: Personal genomes : accessing, sharing, and interpretation

Manuel CorpasStephan BeckGustavo GlusmanMahsa Shabani

Editorial material

Ethics review of big data research : what should stay and what should be reformed?

Agata FerrettiMarcello IencaMark SheehanAlessandro BlasimmeEdward S. DoveBobbie FarsidesPhoebe FriesenJeff KahnWalter KarlenPeter Kleist et al.

A1 Journal Article in BMC MEDICAL ETHICS

Factors that influence data sharing through data sharing platforms : a qualitative study on the views and experiences of cohort holders and platform developers

Thijs DevriendtPascal BorryMahsa Shabani

A1 Journal Article in PLOS ONE

Het uitwisselen van onderzoeksgegevens : belangen en barrières

Thijs DevriendtMahsa ShabaniPascal Borry

A2 Journal Article in TIJDSCHRIFT VOOR GENEESKUNDE

Public involvement in the governance of populationlevel biomedical research : unresolved questions and future directions

Sonja ErikainenPhoebe FriesenLeah RandKarin JongsmaMichael DunnAnnie SorbieMatthew McCoyJessica BellMichael BurgessHaidan Chen et al.

A1 Journal Article in JOURNAL OF MEDICAL ETHICS

The Data Governance Act and the EU's move towards facilitating data sharing

Editorial material

The impact of the GDPR on the governance of biobank research

Mahsa ShabaniGauthier ChassangLuca Marelli

Bookchapter in GDPR and biobanking : individual rights, public interest and research regulation across Europe

Toward better governance of human genomic data

Kieran C. O’DohertyMahsa ShabaniEdward S. DoveHeidi Beate BentzenPascal BorryMichael M. BurgessDon ChalmersJantina De VriesLisa EcksteinStephanie M. Fullerton et al.

Editorial material

2020

Data sharing platforms and the academic evaluation system

Thijs DevriendtMahsa ShabaniPascal Borry

Editorial material

Genomic sequencing capacity, data retention, and personal access to raw data in Europe

Shaman NarayanasamyVarvara MarkinaAdrian ThorogoodAdriana BlazkovaMahsa ShabaniBartha M. KnoppersBarbara PrainsackRobert Koesters

A1 Journal Article in Frontiers in Genetics

Implications of secondary findings in clinical context

Michael MorrisonHarriet TeareGabriella BertierJames BuchananYasmin BylstraClara GaffLeigh JacksonKazuto KatoElke KaufmannSusan Kelly et al.

Bookchapter in Secondary findings in genomic research

Juridisch onderzoek gegevensbeheer Zorginspectie

Lisse Van AckerTim OpgenhaffenEva LievensJohan PutMahsa Shabani

Reporting, recording, and communication of COVID-19 cases in workplace : data protection as a moving target

Mahsa ShabaniTom GoffinHeidi Mertes

Editorial material

Review of policies of companies and databases regarding access to customers' genealogy data for law enforcement purposes

Sevasti SkevaMaarten H. D. LarmuseauMahsa Shabani

A1 Journal Article in PERSONALIZED MEDICINE

2019

Are requirements to deposit data in research repositories compatible with the European Union's general data protection regulation?

Deborah MascalzoniHeidi Beate BentzenIsabelle Budin-LjøsneLee Andrew BygraveJessica BellEdward S. DoveChristian FuchsbergerKristian HveemMichaela Th. MayrhoferViviana Meraviglia et al.

Editorial material

Blockchain-based platforms for genomic data sharing : a de-centralized approach in response to the governance problems?

A1 Journal Article in JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION

Consent insufficient for data release

Dianne NicolLisa EcksteinHeidi Beate BentzenPascal BorryMike BurgessWylie BurkeDon ChalmersMildred ChoEdward DoveStephanie Fullerton et al.

A1 Journal Article in SCIENCE

DNA data marketplace : an analysis of the ethical concerns regarding the participation of the individuals

Eman AhmedMahsa Shabani

A1 Journal Article in FRONTIERS IN GENETICS

Governance of collection, use and storage of RWD in the view of data protection concerns

Model consent clauses for rare disease research

Minh Thu NguyenJack GoldblattRosario IsasiMarlene JagutAnneliene Hechtelt JonkerPetra KautmannLaetitia OuilladeFruszina Molnar-GaborMahsa ShabaniEric Sid et al.

A1 Journal Article in BMC MEDICAL ETHICS

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 ShabaniLuca Marelli

Editorial material

The use of samples originating from doping control procedures for research purposes : a qualitative study

Thijs DevriendtAmicia PhillipsMahsa ShabaniPascal Borry

A1 Journal Article in JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS

Transparency and objectivity in governance of clinical trials data sharing : current practices and approaches

Mahsa ShabaniMojisola Obasa

A1 Journal Article in CLINICAL TRIALS

2018

Forensic epigenetic age estimation and beyond : ethical and legal considerations

Mahsa ShabaniPascal BorryInge SmeersBram Bekaert

Editorial material

Registered access : authorizing data access

Stephanie O. M. DykeMikael LindenIlkka LappalainenJordi Rambla De ArgilaKnox CareyDavid LloydJ. Dylan SpaldingMoran N. CabiliGiselle KerryJulia Foreman et al.

A1 Journal Article in EUROPEAN JOURNAL OF HUMAN GENETICS

The challenges of the expanded availability of genomic information : an agenda-setting paper

Pascal BorryHeidi Beate BentzenIsabelle Budin-LjøsneMartina C. CornelHeidi Carmen HowardOliver FeeneyLeigh JacksonDeborah MascalzoniÁlvaro MendesBorut Peterlin et al.

A2 Journal Article in JOURNAL OF COMMUNITY GENETICS

Umbilical cord blood banking, research and clinical applications : report and recommendations

Rosarie IsasiBartha KnoppersPascal BorryMahsa ShabaniHerman Nys

Variant data sharing by clinical laboratories through public databases : consent, privacy and further contact for research policies

Mahsa ShabaniStephanie O. M. DykeLuca MarelliPascal Borry

A1 Journal Article in GENETICS IN MEDICINE

2017

Genetic testing in Europe : an overview of the legal framework

Dominique SprumontPascal BorryMahsa Shabani

Bookchapter in European health law

Oversight of genomic data sharing : what roles for ethics and data access committees?

Mahsa ShabaniEdward DoveMadeleine MurtaghBartha KnoppersPascal Borry

A1 Journal Article in BIOPRESERVATION AND BIOBANKING

Raw genomic data : storage, access, and sharing

Mahsa ShabaniDanya VearsPascal Borry

Editorial material

Research ethics review for the use of anonymized samples and data : a systematic review of normative documents

Amicia PhillipsPascal BorryMahsa Shabani

A1 Journal Article in ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE

Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation

Mahsa ShabaniPascal Borry

A1 Journal Article in EUROPEAN JOURNAL OF HUMAN GENETICS

2016

'You want the right amount of oversight' : interviews with data access committee members and experts on genomic data access

Mahsa ShabaniPascal Borry

A1 Journal Article in GENETICS IN MEDICINE

Registered access : a ‘Triple-A’ approach

Stephanie O M DykeEmily KirbyMahsa ShabaniAdrian ThorogoodKazuto KatoBartha M Knoppers

A1 Journal Article in EUROPEAN JOURNAL OF HUMAN GENETICS

Research ethics : ethics review for international data-intensive research : ad hoc approaches mix and match existing components

E. S. DoveD. TownendE. M. MeslinM. BobrowK. LittlerD. NicolJ. de VriesA. JunkerC. GarattiniJ. Bovenberg et al.

Editorial material

Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts

Mahsa ShabaniAdrian ThorogoodPascal Borry

A1 Journal Article in EUROPEAN JOURNAL OF HUMAN GENETICS

2015

Challenges of web-based personal genomic data sharing

Mahsa ShabaniPascal Borry

A2 Journal Article in LIFE SCIENCE, SOCIETY AND POLICY

Compendium of policy and ethical framework Umbilical Cord Blood (UCB) : banking, research and clinical Applications

Rosarie IsasiBartha KnoppersPascal BorryMahsa ShabaniHerman Nys

Controlled access under review : improving the governance of genomic data access

Mahsa ShabaniStephanie O. M. DykeYann JolyPascal Borry

A1 Journal Article in PLOS BIOLOGY

From the principles of genomic data sharing to the practices of data access committees

Mahsa ShabaniBartha Maria KnoppersPascal Borry

Editorial material

Genomic databases, access review, and data access committees

Mahsa ShabaniBartha KnoppersPascal Borry

Bookchapter in Medical and Health Genomics

2014

A review of the key issues associated with the commercialization of biobanks

Timothy CaulfieldSarah BurninghamYann JolyZubin MasterMahsa ShabaniPascal BorryAllan BeckerMichael BurgessKathryn CalderChristine Critchley et al.

A1 Journal Article in JOURNAL OF LAW AND THE BIOSCIENCES

Attitudes of research participants and the general public towards genomic data sharing : a systematic literature review

Mahsa ShabaniLouize BezuidenhoutPascal Borry

A1 Journal Article in EXPERT REVIEW OF MOLECULAR DIAGNOSTICS

Is there a right time to know? The right not to know and genetic testing in children

Pascal BorryMahsa ShabaniHeidi Howard

A2 Journal Article in JOURNAL OF LAW, MEDICINE AND ETHICS

2013

Nonpropositional content in direct-to-consumer genetic testing advertisements

Pascal BorryMahsa ShabaniHeidi Howard

Editorial material