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Amsterdam Research Institute for Legal Studies Amsterdam Research Institute for Legal Studies

Dr. M. (Mahsa) Shabani PhD

Faculty of Law
Gezondheidsrecht
Visiting address
  • Nieuwe Achtergracht 166
Postal address
  • Postbus 15557
    1001 NB Amsterdam
Contact details
Social media
  • Profile

    Mahsa Shabani is Associate Professor in Health Privacy Law and Innovation. Prior to joining UvA, she was an assistant professor and co-director of Metamedica Center at Ghent University. Her research focus is on personal data protection, health privacy, data sharing, and data-driven biomedical research ethics, law and policy. She has extensively published her work in scientific journals with a broad readership in the fields of data protection, medical law, bioethics,  genomics and bioinformatics. Previously, she was visiting scholar at the Center of Genomics and Policy at McGill University, the Center for Health, Law and Emerging Technologies (HeLEX) at University of Oxford, and the Columbia CEER at Columbia University Medical Center. Currently, she is a member of the Ethics advisory broad of various European Commission (EC) funded projects. She is also a selected member of the Scientific Committee of the International Rare Diseases Research Consortium, European Society of Human Genetics (member of the SPC) and The Joint Action for the European Health Data Space. She is currently (co-)PI of projects PROPHET ( Horizon Europe), Crowd-scourced genetic data for research purposes (FWO), fairness in secondary uses of health data (BOF), and Smart glasses in primary care (TETRA). 

  • Publications

    2024

    • Bernier, A., Molnár-Gábor, F., Knoppers, B. M., Borry, P., Cesar, P. M. D. G., Devriendt, T., Goisauf, M., Murtagh, M., Nicolás Jiménez, P., Recuero, M., Rial-Sebbag, E., Shabani, M., Wilson, R. C., Zaccagnini, D., & Maxwell, L. (2024). Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory. European Journal of Human Genetics, 32(1), 69-76. https://doi.org/10.1038/s41431-023-01403-y [details]
    • McKibbin, K. J., Popejoy, A. B., & Shabani, M. (2024). Reconciling diversity in health and genomic data collection with the regulation of AI in clinical genomics. Genetics in Medicine, 26(7), Article 101127. https://doi.org/10.1016/j.gim.2024.101127 [details]
    • Pastorino, R., Pezzullo, A. M., Osti, T., Adany, R., Borry, P., Barnhoorn, F., Fadil, E., Kroese, M., Metspalu, A., Perez-Gomez, B., Perola, M., Quaggia, D., Scollen, S., Shabani, M., Swartling Peterson, S., van El, C., Vicente, A., & Boccia, S. (2024). The PROPHET project paves the way for personalized prevention in the future healthcare. European journal of cancer prevention, 33(5), 387-389. https://doi.org/10.1097/CEJ.0000000000000873 [details]
    • Staunton, C., Shabani, M., Mascalzoni, D., Mežinska, S., & Slokenberga, S. (2024). Ethical and social reflections on the proposed European Health Data Space. European Journal of Human Genetics, 32(5), 498–505. https://doi.org/10.1038/s41431-024-01543-9 [details]

    2023

    • Cervera de la Cruz, P., & Shabani, M. (2023). Conceptualizing fairness in the secondary use of health data for research: A scoping review. Accountability in Research. Advance online publication. https://doi.org/10.1080/08989621.2023.2271394
    • De Smet , P., & Shabani, M. (2023). Genetic data sharing in the view of the EU general data protection regulation (GDPR). In Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine (pp. 171-187). Academic Press. https://doi.org/10.1016/B978-0-12-819803-2.00012-2
    • Devriendt, T., Shabani, M., & Borry, P. (2023). Reward systems for cohort data sharing: An interview study with funding agencies. PLoS ONE, 18(3), Article e0282969. https://doi.org/10.1371/journal.pone.0282969
    • Lang, M., McKibbin, K., Shabani, M., Borry, P., Gautrais, V., Verbeke, K., & Zawati, M. H. (2023). Crowdsourcing smartphone data for biomedical research: Ethical and legal questions. Digital Health, 9. https://doi.org/10.1177/20552076231204428 [details]
    • Marelli, L., Stevens, M., Sharon, T., Van Hoyweghen, I., Boeckhout, M., Colussi, I., Degelsegger-Márquez, A., El-Sayed, S., Hoeyer, K., van Kessel, R., Krekora Zając, D., Matei, M., Roda, S., Prainsack, B., Schlünder, I., Shabani, M., & Southerington, T. (2023). The European health data space: Too big to succeed? Health Policy, 135, Article 104861. https://doi.org/10.1016/j.healthpol.2023.104861 [details]
    • McKibbin, K., & Shabani, M. (2023). Genomic Data as a National Strategic Resource: Implications for the Genomic Commons and International Data Sharing for Biomedical Research and Innovation. The Journal of law, medicine & ethics , 51(2), 301-313. https://doi.org/10.1017/jme.2023.77 [details]
    • McKibbin, K., Shabani, M., & Larmuseau, M. H. D. (2023). From collected stamps to hair locks: ethical and legal implications of testing DNA found on privately owned family artifacts. Human Genetics, 142(3), 331-341. https://doi.org/10.1007/s00439-022-02508-y

    2022

    • Devriendt, T., Borry, P., & Shabani, M. (2022). Credit and Recognition for Contributions to Data-Sharing Platforms Among Cohort Holders and Platform Developers in Europe: Interview Study. Journal of Medical Internet Research, 24(1), Article e25983. https://doi.org/10.2196/25983
    • Devriendt, T., Shabani, M., & Borry, P. (2022). Policies to regulate data sharing of cohorts via data infrastructures: An interview study with funding agencies. International Journal of Medical Informatics, 168, 104900. https://doi.org/10.1016/j.ijmedinf.2022.104900
    • McKibbin, K. J., & Shabani, M. (2022). Building a better mobile app marketplace: A legal and governance toolkit for app mediated genomics research. Computer Law & Security Review, 46, Article 105707. https://doi.org/10.1016/j.clsr.2022.105707
    • Shabani, M. (2022). Will the European Health Data Space change data sharing rules? Science (New York, N.Y.), 375(6587), 1357-1359. https://doi.org/10.1126/science.abn4874
    • Shabani, M., & Yilmaz, S. (2022). Lawfulness in secondary use of health data. Technology and Regulation. https://doi.org/10.26116/techreg.2022.013

    2021

    • Corpas, M., Beck, S., Glusman, G., & Shabani, M. (2021). Editorial: Personal Genomes: Accessing, Sharing, and Interpretation. Frontiers in Genetics, 12, 687584. https://doi.org/10.3389/fgene.2021.687584
    • Devriendt, T., Ammann, C., W Asselbergs, F., Bernier, A., Costas, R., Friedrich, M. G., Gelpi, J. L., Jarvelin, M-R., Kuulasmaa, K., Lekadir, K., Mayrhofer, M. T., Papez, V., Pasterkamp, G., Petersen, S. E., Schmidt, C. O., Schulz-Menger, J., Söderberg, S., Shabani, M., Veronesi, G., ... Borry, P. (2021). An agenda-setting paper on data sharing platforms: euCanSHare workshop. Open Research Europe, 1, 80. https://doi.org/10.12688/openreseurope.13860.2
    • Devriendt, T., Borry, P., & Shabani, M. (2021). Factors that influence data sharing through data sharing platforms: A qualitative study on the views and experiences of cohort holders and platform developers. PLoS ONE, 16(7), e0254202. https://doi.org/10.1371/journal.pone.0254202
    • Devriendt, T., Shabani, M., & Borry, P. (2021). Data Sharing in Biomedical Sciences: A Systematic Review of Incentives. Biopreservation and Biobanking, 19(3), 219-227. https://doi.org/10.1089/bio.2020.0037
    • Erikainen, S., Friesen, P., Rand, L., Jongsma, K., Dunn, M., Sorbie, A., McCoy, M., Bell, J., Burgess, M., Chen, H., Chico, V., Cunningham-Burley, S., Darbyshire, J., Dawson, R., Evans, A., Fahy, N., Finlay, T., Frith, L., Goldenberg, A., ... Sheehan, M. (2021). Public involvement in the governance of population-level biomedical research: unresolved questions and future directions. Journal of Medical Ethics, 47(7), 522–525. https://doi.org/10.1136/medethics-2020-106530
    • Ferretti, A., Ienca, M., Sheehan, M., Blasimme, A., Dove, E. S., Farsides, B., Friesen, P., Kahn, J., Karlen, W., Kleist, P., Liao, S. M., Nebeker, C., Samuel, G., Shabani, M., Rivas Velarde, M., & Vayena, E. (2021). Ethics review of big data research: What should stay and what should be reformed? BMC Medical Ethics, 22(1), 51. https://doi.org/10.1186/s12910-021-00616-4
    • O'Doherty, K. C., Shabani, M., Dove, E. S., Bentzen, H. B., Borry, P., Burgess, M. M., Chalmers, D., De Vries, J., Eckstein, L., Fullerton, S. M., Juengst, E., Kato, K., Kaye, J., Knoppers, B. M., Koenig, B. A., Manson, S. M., McGrail, K. M., McGuire, A. L., Meslin, E. M., ... Burke, W. (2021). Toward better governance of human genomic data. Nature genetics, 53(1), 2-8. https://doi.org/10.1038/s41588-020-00742-6
    • Shabani, M. (2021). Collection and sharing of genomic and health data for research purposes: Going beyond data collection in traditional research settings. BioLaw Journal , 2021(1S), 251-260. https://doi.org/10.15168/2284-4503-20211S
    • Shabani, M. (2021). Data Access Governance. In The Cambridge Handbook of Health Research Regulation Cambridge University Press.
    • Shabani, M. (2021). The Data Governance Act and the EU's move towards facilitating data sharing. Molecular Systems Biology, 17(3), e10229. https://doi.org/10.15252/msb.202110229
    • Shabani, M. (2021). The Impact of the GDPR on the Governance of Biobank Research. In GDPR and Biobanking Springer.

    2020

    • Devriendt, T., Shabani, M., & Borry, P. (2020). Data sharing platforms and the academic evaluation system. EMBO Reports, 21(8), e50690. https://doi.org/10.15252/embr.202050690
    • Narayanasamy, S., Markina, V., Thorogood, A., Blazkova, A., Shabani, M., Knoppers, B. M., Prainsack, B., & Koesters, R. (2020). Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe. Frontiers in Genetics, 11, 303. https://doi.org/10.3389/fgene.2020.00303
    • Shabani, M. (2020). Implications of secondary findings for clinical contexts. In Secondary Findings in Genomic Research Elsevier.
    • Shabani, M., Goffin, T., & Mertes, H. (2020). Reporting, recording, and communication of COVID-19 cases in workplace: data protection as a moving target. Journal of Law and the Biosciences, 7(1), lsaa008. https://doi.org/10.1093/jlb/lsaa008
    • Skeva, S., Larmuseau, M. H., & Shabani, M. (2020). Review of policies of companies and databases regarding access to customers' genealogy data for law enforcement purposes. Personalized medicine, 17(2), 141-153. https://doi.org/10.2217/pme-2019-0100

    2019

    • Ahmed, E., & Shabani, M. (2019). DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals. Frontiers in Genetics, 10, 1107. https://doi.org/10.3389/fgene.2019.01107
    • Devriendt, T., Phillips, A., Shabani, M., & Borry, P. (2019). The Use of Samples Originating From Doping Control Procedures for Research Purposes: A Qualitative Study. Journal of Empirical Research on Human Research Ethics, 14(3), 254-261. https://doi.org/10.1177/1556264619842782
    • IRDiRC-GA4GH Model Consent Clauses Task Force, Nguyen, M. T., Goldblatt, J., Isasi, R., Jagut, M., Jonker, A. H., Kaufmann, P., Ouillade, L., Molnar-Gabor, F., Shabani, M., Sid, E., Tassé, A. M., Wong-Rieger, D., & Knoppers, B. M. (2019). Model consent clauses for rare disease research. BMC Medical Ethics, 20(1), 55. https://doi.org/10.1186/s12910-019-0390-x
    • Mascalzoni, D., Bentzen, H. B., Budin-Ljøsne, I., Bygrave, L. A., Bell, J., Dove, E. S., Fuchsberger, C., Hveem, K., Mayrhofer, M. T., Meraviglia, V., O'Brien, D. R., Pattaro, C., Pramstaller, P. P., Rakic, V., Rossini, A., Shabani, M., Svantesson, D. J. B., Tomasi, M., Ursin, L., ... Kaye, J. (2019). Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation? Annals of Internal Medicine, 170(5), 332-334. https://doi.org/10.7326/M18-2854
    • Nicol, D., Eckstein, L., Bentzen, H. B., Borry, P., Burgess, M., Burke, W., Chalmers, D., Cho, M., Dove, E., Fullerton, S., Ida, R., Kato, K., Kaye, J., Koenig, B., Manson, S., McGrail, K., Meslin, E., O'Doherty, K., Prainsack, B., ... de Vries, J. (2019). Consent insufficient for data release. Science (New York, N.Y.), 364(6439), 445-446. https://doi.org/10.1126/science.aax0892
    • Shabani, M. (2019). Blockchain-based platforms for genomic data sharing: a de-centralized approach in response to the governance problems? Journal of the American Medical Informatics Association, 26(1), 76-80. https://doi.org/10.1093/jamia/ocy149
    • Shabani, M., & Marelli, L. (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. EMBO Reports, 20(6). https://doi.org/10.15252/embr.201948316
    • Shabani, M., & Obasa, M. (2019). Transparency and objectivity in governance of clinical trials data sharing: Current practices and approaches. Clinical Trials, 16(5), 547-551. https://doi.org/10.1177/1740774519865517
    • Shabani, M., Dyke, S. O. M., Marelli, L., & Borry, P. (2019). Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies. Genetics in Medicine, 21(5), 1031-1037. https://doi.org/10.1038/s41436-018-0316-x

    2018

    • Borry, P., Bentzen, H. B., Budin-Ljøsne, I., Cornel, M. C., Howard, H. C., Feeney, O., Jackson, L., Mascalzoni, D., Mendes, Á., Peterlin, B., Riso, B., Shabani, M., Skirton, H., Sterckx, S., Vears, D., Wjst, M., & Felzmann, H. (2018). The challenges of the expanded availability of genomic information: an agenda-setting paper. Journal of Community Genetics, 9(2), 103-116. https://doi.org/10.1007/s12687-017-0331-7
    • Dyke, S. O. M., Linden, M., Lappalainen, I., De Argila, J. R., Carey, K., Lloyd, D., Spalding, J. D., Cabili, M. N., Kerry, G., Foreman, J., Cutts, T., Shabani, M., Rodriguez, L. L., Haeussler, M., Walsh, B., Jiang, X., Wang, S., Perrett, D., Boughtwood, T., ... Flicek, P. (2018). Registered access: authorizing data access. European Journal of Human Genetics, 26(12), 1721-1731. https://doi.org/10.1038/s41431-018-0219-y
    • Shabani, M., & Borry, P. (2018). Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation. European Journal of Human Genetics, 26(2), 149-156. https://doi.org/10.1038/s41431-017-0045-7
    • Shabani, M., Borry, P., Smeers, I., & Bekaert, B. (2018). Forensic Epigenetic Age Estimation and Beyond: Ethical and Legal Considerations. Trends in Genetics, 34(7), 489-491. https://doi.org/10.1016/j.tig.2018.03.006
    • Shabani, M., Vears, D., & Borry, P. (2018). Raw Genomic Data: Storage, Access, and Sharing. Trends in Genetics, 34(1), 8-10. https://doi.org/10.1016/j.tig.2017.10.004

    2017

    • Phillips, A., Borry, P., & Shabani, M. (2017). Research ethics review for the use of anonymized samples and data: A systematic review of normative documents. Accountability in Research, 24(8), 483-496. https://doi.org/10.1080/08989621.2017.1396896
    • Shabani, M. (2017). Genetic testing in Europe. An overview of the legal framework. In European Health Law Maklu.
    • Shabani, M., Dove, E. S., Murtagh, M., Knoppers, B. M., & Borry, P. (2017). Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees? Biopreservation and Biobanking, 15(5), 469-474. https://doi.org/10.1089/bio.2017.0045

    2016

    • Dove, E. S., Townend, D., Meslin, E. M., Bobrow, M., Littler, K., Nicol, D., de Vries, J., Junker, A., Garattini, C., Bovenberg, J., Shabani, M., Lévesque, E., & Knoppers, B. M. (2016). RESEARCH ETHICS. Ethics review for international data-intensive research. Science (New York, N.Y.), 351(6280), 1399-400. https://doi.org/10.1126/science.aad5269
    • Dyke, S. O. M., Kirby, E., Shabani, M., Thorogood, A., Kato, K., & Knoppers, B. M. (2016). Registered access: a 'Triple-A' approach. European Journal of Human Genetics, 24(12), 1676-1680. https://doi.org/10.1038/ejhg.2016.115
    • Knoppers, B. M., Sénécal, K., Boisjoli, J., Borry, P., Cornel, M. C., Fernandez, C. V., Grewal, J., Holm, I. A., Nelson, E., Pinxten, W., Shabani, M., Tassé, A. M., Zawati, M., & Clayton, W. (2016). Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority. IRB, A Review of Human Subjects Research, 38(6), 1-9.
    • Shabani, M. (2016). Genomic Databases, Access Review, and Data Access Committees. In Medical and Health Genomics Elsevier.
    • Shabani, M., & Borry, P. (2016). "You want the right amount of oversight": interviews with data access committee members and experts on genomic data access. Genetics in Medicine, 18(9), 892-7. https://doi.org/10.1038/gim.2015.189
    • Shabani, M., Thorogood, A., & Borry, P. (2016). Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts. European Journal of Human Genetics, 24(12), 1671-1675. https://doi.org/10.1038/ejhg.2016.111

    2015

    2014

    • Borry, P., Shabani, M., & Howard, H. C. (2014). Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 42(1), 19-27. https://doi.org/10.1111/jlme.12115
    • Caulfield, T., Burningham, S., Joly, Y., Master, Z., Shabani, M., Borry, P., Becker, A., Burgess, M., Calder, K., Critchley, C., Edwards, K., Fullerton, S. M., Gottweis, H., Hyde-Lay, R., Illes, J., Isasi, R., Kato, K., Kaye, J., Knoppers, B., ... Zawati, M. H. (2014). A review of the key issues associated with the commercialization of biobanks. Journal of Law and the Biosciences, 1(1), 94-110. https://doi.org/10.1093/jlb/lst004
    • Shabani, M., Bezuidenhout, L., & Borry, P. (2014). Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review. Expert Review of Molecular Diagnostics, 14(8), 1053-1065. https://doi.org/10.1586/14737159.2014.961917

    2013

    • Borry, P., Shabani, M., & Howard, H. C. (2013). Nonpropositional content in direct-to-consumer genetic testing advertisements. The American Journal of Bioethics, 13(5), 14-16. https://doi.org/10.1080/15265161.2013.776358

    Talk / presentation

    • Shabani, M. (speaker) (10-1-2024). Fairness in secondary uses of health data and European Health Data Space, Brocher Foundation.
    • Shabani, M. (speaker) (8-1-2024). Fairness in data-driven personalized medicine and role of the regulation, ETH Zürich.
    • Shabani, M. (speaker) (13-11-2023). The EU regulatory framework for use of mHealth related apps for research purposes, Legal and ethical concerns related to use of crowd-sourced data for biomedical research purposes .
    • Shabani, M. (speaker) (18-10-2023). Policies of clinical labratories related to sharing variants through public genomic databases, Quality assurance, variant interpretation and data management in the NGS diagnostics era.
    • Shabani, M. (speaker) (11-9-2023). EU rules and regulation for responsible genomic data sharing, Annual conference Human Reference Genomic Consortium .
    • Shabani, M. (speaker) (7-12-2022). Ethical and legal issues of data protection and data sharing, 6th ERN-EYE scientific workshop "Rare Eye Disease: Challenges and dilemmas in the era of genomic and personalised medicine.
    • van Kolfschooten, H. (keynote speaker) & Shabani, M. (keynote speaker) (28-10-2022). Understanding AI webinar series: EU Legislation on AI - The New AI Act: Challenges for Patients' Rights and the European Health Data Space, European Patients' Forum. https://www.eu-patient.eu/ai-knowledgehub/epf_aiwork/ai-webinarseries/

    Others

    • Shabani, M. (participant) (10-6-2023). European Society of Human Genetics Conference (organising a conference, workshop, ...).
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  • Ancillary activities
    • Ghent University
      Guest Professor (unpaid)
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