GHGA Lecture Series: Adrian Thorogood (virtual)
Adrian Thorogood from the Centre for Systems Biomedicine at the University of Luxembourg presented "Weaving Together Governance and Infrastructure in the EU 1+ Million Genomes Initiative" at the GHGA lecture series ("Advances in Data-Driven Biomedicine") on May 2, 2022.
The database architecture supporting genomic and health-related data sharing is rapidly evolving through national and European efforts, including the 1+ Million Genomes Initiative, a government-led effort to provide secure access to a virtual European cohort in support of research, healthcare, and policy making. The architecture is being reconfigured into a federated network, where data remain securely stored in national data hubs that can be visited remotely by accessing users. This strategic shift takes advantage of novel technical capacities to respond to a constellation of legal, political, and sustainability challenges. While efforts currently focus on the infrastructure needed to realize this vision, it is increasingly clear that effective and responsible data exchange and re-use also depends on compatibility between legal frameworks and coordination between institutional policies and processes. This presentation will outline the proposed data governance framework model for the EU 1+ Million Genomes Initiative, which seeks to promote and streamline access to genomic and health-related data held securely within Member Countries, while demonstrating respect for legal and ethical obligations. The model highlights the interdependencies between law, governance, and infrastructure that must be addressed to advance European data sharing and collaboration.
Adrian Thorogood (B.A.&Sc., B.C.L.&LL.B., LL.M.) is a lawyer and legal researcher in the Bioinformatics Core, Luxembourg Centre for Systems Biomedicine, University of Luxembourg. His research focuses on how genomic sequencing platforms, information and networking technologies, open science practices, and patient empowerment movements
are disrupting research and health care (https://orcid.org/0000-0001-5078-8164). Adrian assists numerous cross-border data sharing initiatives with ethical and legal issues, including the EU 1+ Million Genomes Initiative and the European Platform for Neurodegenerative Diseases. He is also an international fellow in the Lincdat project, based in Heidelberg, which explores ethical and legal aspects of clinical data re-use. Previously, Adrian was a legal researcher at the Centre of Genomics and Policy at McGill University in Canada, and the Regulatory and Ethics Manager of the Global Alliance for Genomics and Health (GA4GH), a public-private consortium promoting standards to enable responsible genomic data exchange. With the GA4GH, Adrian led the development of international policy frameworks for data sharing, addressing issues of consent, data privacy and security, and intellectual property. Adrian completed his Master of Laws at the University of Toronto in Canada. His thesis proposed ways to overcome incompatibilities between legal systems that hinder international health research. He also holds a joint common law / civil law degree from McGill University