Global Perspectives of Regulating Genetic Data in Scientific Research: What Else Beyond Privacy?

  • Panel
  • Le Baixu
  • Wednesday 21.05 — 14:15 - 15:30

Organising Institution

Health & Ageing Law Lab (HALL), VUB

Belgium

The Health and Ageing Law Lab (HALL) is an interdisciplinary research group, comprising part of the internationally renowned Research Group on Law, Science, Technology & Society (LSTS) at the Faculty of Law and Criminology of Vrije Universiteit Brussel (VUB). HALL brings together international legal scholars, established researchers, and senior practitioners working at the intersection of health, law and technology. The research group investigates legal and regulatory frameworks on data protection and the rights of data subjects in healthcare contexts, analysing policies and current trends in health data governance, and exploring legal and ethical dimensions in the use of advanced technologies and AI-enhanced interventions for patients and elderly care. The research group is actively involved in a number of research projects, offering expertise in all areas of EU law and policy development, legal and regulatory compliance, ethics and data management. HALL has an excellent track record of delivering high-quality outputs and contributing substantially to the successful implementation of a broad range of research projects funded in the scope of Horizon 2020 and Horizon Europe. HALL is the organiser of the annual Symposium on Health, Law and Technology (HELT), a multidisciplinary event providing a unique platform for insightful and stimulating exchanges on the latest trends and future of health and technology, through the lens of regulatory responses and relevant policy initiatives. In 2024, HALL also introduced HELT Talks, a year-round (monthly) event fostering open dialogue and extended discussions around controversial issues in the domains of health, law, and technology. As an interdisciplinary group, HALL enjoys collaboration with healthcare professionals (including at the University Hospital Brussels - UZ Brussel), research scientists, software engineers and a range of societal actors in Brussels, the Flanders region, and internationally across Europe.
  • Academic 3
  • Business 1
  • Policy 2
Genomics research drives advancements in precision medicine, clinical diagnostics, and treatments. However, using genetic data in research encounters complex legal, ethical, and regulatory challenges worldwide. The EU’s data protection framework sets special rules for genetic data processing in research, while the recent initiative of the European Health Data Space (EHDS) intensifies debates over secondary use. Beyond privacy, genetic data holds unique legal attributes with societal, familial, and national implications, which is underemphasized in EU law but evident in other jurisdictions. For example, China views genetic data as a critical national resource tied to bio-sovereignty and security; whereas the US adopts a market-driven approach to boost biotechnology and balance privacy, with growing biosecurity concerns amid shifting geopolitics. This panel aims to explore the changing general nature of genomics and discuss genetic data governance in research through these global perspectives.

Questions to be answered

  1. How does the EU’s existing legal framework(s) address the use of genetic data in scientific research (such as the GDPR and the EHDS)?
  2. What legal attributes do genetic data possess beyond privacy, and how does the EU framework address (or overlook) these attributes?
  3. How does China’s biosecurity approach shape its governance over genetic data, and what are the implications for international scientific collaboration in genomics?
  4. What are the implications of the US regulatory approach to genetic data for research and innovation?

Moderator

Andrea Martani

University of Basel - Switzerland

Dr. Martani is a researcher at the Institute for Biomedical Ethics of the University of Basel. He has a background both in policy/legal analysis, but also empirical (qualitative and quantitative) studies in bioethics and health law. His expertise is in the analysis of how legal rules and policies in the biomedical field evolve as a consequence of technological innovation and changing public attitudes. He is specialised in digital health both at a Swiss and EU level, and has extensively published on health data policy and data protection law in the biomedical field.

Speaker

Paul Quinn

Health & Ageing Law Lab (HALL), VUB - Belgium

Paul is a Law Professor at the Vrije Universiteit Brussel (VUB – Free University of Brussels). He is an expert in legal and ethical issues related to the use of health data. His expertise includes data protection, privacy issues, AI, and the secondary use of health data. He also completed his PhD on issues related to stigmatization and discrimination. At the VUB, he founded the Health and Ageing Law Lab (HALL). He coordinates research on such issues through a range of international and national consortia. He has successfully secured participation in numerous research projects as an expert on legal and ethical issues related to privacy and data protection. Paul is also a member of the University’s Ethics Board for Research in the Social Sciences and the University Hospital Medical Ethics Commission. Before entering academia, Paul worked in the legal industry in the UK. He trained as a Barrister (Bar of England and Wales) and is a member of Gray’s Inn. He holds degrees in European and International Law (LLM, Institute of European Studies, Brussels), Law (MA, University of Sheffield), and Biochemistry (University of Sheffield).

Speaker

Ruoxin Su

Health & Ageing Law Lab (HALL), VUB - Belgium

Ruoxin Su is a doctoral researcher at the Law, Science, Technology and Society (LSTS) research group and a member of the Health and Aging Law Lab (HALL) at Vrije University Brussel (VUB). She starts this position in June 2023 under the supervision of Prof. Paul Quinn. Her PhD research focuses on the use of genetic data in scientific research from a comparative perspective through EU and Chinese law. Her research areas also include the protection of (women’s) health data, cybersecurity for medical devices, cross-border data transfer, and Chinese digital laws and policies. Currently, Ruoxin is also engaged with several projects funded by the European Union, surrounding topics of cybersecurity for medical devices, environment-related impacts on health, and gender equality in education. Ruoxin holds a Master of Laws (LL.M., 2021) in Advanced Studies in Law and Digital Technologies from Leiden University, the Netherlands, and a Bachelor of Laws (LL.B., 2020) from Zhongnan University of Economics and Law, China. Before joining VUB, Ruoxin worked as a lawyer in Beijing, China in areas of data privacy, cybersecurity, telecom and digital services law. She also seconded at Apple’s Beijing office to support internal privacy compliance matters with the global privacy team.

Speaker

Johanna Rahnasto

Roschier, Attorneys Ltd. - Finland

Johanna Rahnasto works as a Senior Associate at Roschier, Attorneys Ltd. in Helsinki focusing on intellectual property and data protection in the life sciences field. She has an LL.M. degree from Harvard Law School in addition to a Finnish law degree and a master's degree in genetics and molecular biosciences. She is particularly interested in the interjection of law, policy and biosciences and explores this also in her doctoral research regarding genetic data governance at the University of Helsinki.

Speaker

Róisín Costello

Trinity College Dublin - Ireland

Dr Róisín Á Costello is an Assistant Professor of EU and International Law in the Law School at Trinity College Dublin and a practicing barrister. She is the author and editor of volumes published by Hart, Bloomsbury and Edinburgh University Press on issues in privacy law, data protection and law & humanities. Her research has been funded by the Irish Research Council, the Government of Ireland, the ESRC, and the AHRC. Róisín’s recent articles can be found in the Human Rights Law Review, Law & Humanities, Global Constitutionalism, the Journal of Law and Religion, and The Irish Jurist among others. She is the author of ‘Privacy Law in Ireland’ (Bloomsbury) and a forthcoming volume, also with Bloomsbury, on Irish data protection legislation.