Mahsa Shabani is an Assistant Professor in Privacy Law at IRCP. She is also a member of the Metamedica (Interfaculty platform for ethics and law of healthcare technologies) and PIXLES (Privacy, Information Exchange, Law Enforcement & Surveillance). Her research focus is on personal data protection, health privacy, data sharing and access platforms, and biomedical and genomics 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. Between years 2012-2019, she was affiliated with the Center for Biomedical Ethics and Law at KU Leuven as a doctoral researcher and a FWO post-doctoral fellow. Previously, she was a 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. In the recent years, she has been collaborating with various international and European projects such as the Regulatory and Ethics Working Group of Global Alliance for Genomics and Health initiative, EUCelLEX and euCanSHare projects. Currently, she is a member of the Ethics advisory broad of various European Commission (EC) and IMI funded projects (Konfido, RHAPSODY, BEAT-DKD, and HEADSpAcE projects) and acts as an external expert for the EC. She is also a selected member of the Scientific Committee of the International Rare Diseases Research Consortium. She supervises master and doctoral students in the framework of interdisciplinary research projects and contributes to teaching, training and dissemination activities on various aspects of data protection and health privacy on the international and European level.
- TELEPHONE SECRETARIAT: +32 9 264 69 30
- ADRESS: Universiteitstraat 4, Ghent, Belgium
- ORCID: 0000-0001-7128-0474
Selected societal impact activities
- 03/07/2018 – Interview with Science magazine: Crime scene DNA could be used to reveal a suspect’s age—and whether they have cancer
- 02/02/2016 – Blogpost in Bill of Health (the Petrie-Flom Center at Harvard Law School weblog) – Genomic data sharing: How much oversight is necessary?
- 08/04/2015 – Blogpost in DNA Digest Website – Genomic Data Sharing – Ethical and Scientific Imperative
- 11-12/04/2019 – Cambridge – Co-organizer of “Accessing, sharing and interpreting personal genomes”: Wellcome Trust Advanced Courses and Scientific Conferences
- 31/08-01/09/2017 – Louvain – Co-organizer of the Interuniversity summer course on “Clinical and Research Genomic Data Sharing and Access”
- 26-27/09/2019 – Masur Auditorium, National Institutes of Health, USA – Symposium on Personal Control of Genomic Data for Research
- Data protection
- Health Privacy
- Biomedical and genomics research (ethics, law and policy)
- 2018-2021 – euCanSHare project: An EU-Canada joint infrastructure for next-generation multi-study Heart Research
- 2014-present – Global Alliance for Genomics and Health, Regulatory and Ethics Toolkit
- 2013-2016 – EUCelLEX Project: Cell-based re-generative medicine: New challenges for EU legislation and governance
- 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 doi: 10.15252/embr.201948316.
- 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. doi: 10.1093/jamia/ocy149.
- 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. doi: 10.1038/s41431-017-0045-7.