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Author Details

Mahsa Shabani
Ghent University
2013
48
17
PMIDPaper TitleJournal TitlePublished Year
37322132Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory.Eur J Hum Genet2024
36456648From collected stamps to hair locks: ethical and legal implications of testing DNA found on privately owned family artifacts.Hum Genet2023
37799497Crowdsourcing smartphone data for biomedical research: Ethical and legal questions.Digit Health2023
37655566Genomic Data as a National Strategic Resource: Implications for the Genomic Commons and International Data Sharing for Biomedical Research and Innovation.J Law Med Ethics2023
37399677The European health data space: Too big to succeed?Health Policy2023
36961773Reward systems for cohort data sharing: An interview study with funding agencies.PLoS One2023
35324305Will the European Health Data Space change data sharing rules?Science2022
36332520Policies to regulate data sharing of cohorts via data infrastructures: An interview study with funding agencies.Int J Med Inform2022
35023849Credit and Recognition for Contributions to Data-Sharing Platforms Among Cohort Holders and Platform Developers in Europe: Interview Study.J Med Internet Res2022
33414545Toward better governance of human genomic data.Nat Genet2021
37645200An agenda-setting paper on data sharing platforms: euCanSHare workshop.Open Res Eur2021
33926229Data Sharing in Biomedical Sciences: A Systematic Review of Incentives.Biopreserv Biobank2021
33755313The Data Governance Act and the EU's move towards facilitating data sharing.Mol Syst Biol2021
33931049Ethics review of big data research: What should stay and what should be reformed?BMC Med Ethics2021
34214146Factors that influence data sharing through data sharing platforms: A qualitative study on the views and experiences of cohort holders and platform developers.PLoS One2021
34149819Editorial: Personal Genomes: Accessing, Sharing, and Interpretation.Front Genet2021
32125932Review of policies of companies and databases regarding access to customers' genealogy data for law enforcement purposes.Per Med2020
32656889Data sharing platforms and the academic evaluation system.EMBO Rep2020
32728456Reporting, recording, and communication of COVID-19 cases in workplace: data protection as a moving target.J Law Biosci2020
33023977Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.J Med Ethics2020
32435258Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe.Front Genet2020
30293992Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies.Genet Med2019
31749843DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals.Front Genet2019
31347399Transparency and objectivity in governance of clinical trials data sharing: Current practices and approaches.Clin Trials2019
31126909Re-identifiability of genomic data and the GDPR: Assessing the re-identifiability of genomic data in light of the EU General Data Protection Regulation.EMBO Rep2019
30776795Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?Ann Intern Med2019
31113287The Use of Samples Originating From Doping Control Procedures for Research Purposes: A Qualitative Study.J Empir Res Hum Res Ethics2019
31048483Consent insufficient for data release.Science2019
30496430Blockchain-based platforms for genomic data sharing: a de-centralized approach in response to the governance problems?J Am Med Inform Assoc2019
29187736Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation.Eur J Hum Genet2018
30069064Registered access: authorizing data access.Eur J Hum Genet2018
29674182Forensic Epigenetic Age Estimation and Beyond: Ethical and Legal Considerations.Trends Genet2018
29132689Raw Genomic Data: Storage, Access, and Sharing.Trends Genet2018
28952070The challenges of the expanded availability of genomic information: an agenda-setting paper.J Community Genet2018
28836815Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees?Biopreserv Biobank2017
29140743Research ethics review for the use of anonymized samples and data: A systematic review of normative documents.Account Res2017
26795589"You want the right amount of oversight": interviews with data access committee members and experts on genomic data access.Genet Med2016
30088377Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority.IRB2016
27677416Registered access: a 'Triple-A' approach.Eur J Hum Genet2016
27552966Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts.Eur J Hum Genet2016
27013718RESEARCH ETHICS. Ethics review for international data-intensive research.Science2016
25759363From the principles of genomic data sharing to the practices of data access committees.EMBO Mol Med2015
26720729Controlled Access under Review: Improving the Governance of Genomic Data Access.PLoS Biol2015
26085313Challenges of web-based personal genomic data sharing.Life Sci Soc Policy2015
25260013Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review.Expert Rev Mol Diagn2014
27774156A review of the key issues associated with the commercialization of biobanks.J Law Biosci2014
26767473Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children.J Law Med Ethics2014
23557036Nonpropositional content in direct-to-consumer genetic testing advertisements.Am J Bioeth2013
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Collaborators

Pascal Borry
Center for Biomedical Ethics and Law
Co-authored papers 29
Bartha Maria Knoppers
McGill University
Co-authored papers 10
Edward S Dove
University of Edinburgh
Co-authored papers 6
Kazuto Kato
Osaka University
Co-authored papers 5
Adrian Thorogood
Terry Fox Research Institute.
Co-authored papers 5
Jane Kaye
University of Oxford
Co-authored papers 4
Dianne Nicol
University of Tasmania
Co-authored papers 4
Stephanie O M Dyke
Montreal Neurological Institute, McGill University
Co-authored papers 4
Eric M Meslin
Dalla Lana School of Public Health, University of Toronto
Co-authored papers 4
Ma'n H Zawati
McGill University
Co-authored papers 3
Stephanie M Fullerton
University of Washington School of Medicine
Co-authored papers 3
Deborah Mascalzoni
Institute for Biomedicine (Affiliated Institute of the University of Lubeck)
Co-authored papers 2
Stephan Beck
UCL Cancer Institute, University College London
Co-authored papers 2
Effy Vayena
Health Ethics and Policy Lab, ETH Zurich
Co-authored papers 2
Danya F Vears
University of Melbourne
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Barbara A Koenig
University of California-San Francisco.
Co-authored papers 2
Amy L McGuire
Baylor College of Medicine.
Co-authored papers 2
Don Chalmers
University of Tasmania
Co-authored papers 2
Yann Joly
McGill University.
Co-authored papers 2
Wylie Burke
The Heart Institute, Cincinnati Children's Hospital Medical Center
Co-authored papers 2
Ilkka Lappalainen
European Bioinformatics Institute
Co-authored papers 1
Serena Scollen
Pfizer Ltd
Co-authored papers 1
Sarah Burningham
Health Law Institute, University of Alberta
Co-authored papers 1
Gustavo Glusman
Institute for Systems Biology
Co-authored papers 1
Xiaoqian Jiang
Carnegie Mellon University, The University of Texas Health Science Center at Houston, University of California San Diego
Co-authored papers 1
Holly K Tabor
Stanford Center for Biomedical Ethics (SCBE), Stanford University
Co-authored papers 1
Knox Carey
Co-authored papers 1
Emmanuelle Rial-Sebbag
Inserm, Toulouse Paul Sabatier University
Co-authored papers 1
Davide Zaccagnini
Co-authored papers 1
John D Spalding
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Release 1.2