Health Data Sharing and Governance specialist

Home > Health Data Sharing and Governance specialist Health Data Sharing and Governance specialist Health Data Sharing and Governance specialist The Institute The Centre for Genomic Regulation (CRG) is an international biomedical research institute of excellence, based in Barcelona, Spain, with more than 400 scientists from 44 countries. The CRG is composed of an interdisciplinary, motivated and creative scientific team which is supported both by flexible and efficient administration and by high-end and innovative technologies. We are seeking a Health Data Sharing and Governance Specialist, AI and Research to support the European Genome-phenome Archive (EGA) at the intersection of law, biomedical research, data governance, open science and emerging technologies. The selected candidate will contribute to the development and implementation of legal, ethical and governance frameworks for the responsible sharing and reuse of human genomic, phenotypic and other sensitive biomedical data. The role will focus on translating complex legal and regulatory requirements into practical policies, agreements, procedures and guidance for researchers, data access committees and research infrastructures. Key areas will include data access and secondary use of biomedical data, data-sharing agreements, consent, data-use conditions, data protection, AI governance and emerging regulatory frameworks. The candidate will work closely with multidisciplinary EGA teams, EMBL-EBI and international partners, and contribute to European-funded projects related to biomedical data sharing, federated access, FAIR data and responsible AI. About the EGA The European Genome-Phenome Archive (EGA, www.ega-archive.org ) is a secure service for the permanent archiving and sharing of sensitive genetic, phenotypic, and clinical data resulting from biomedical research projects. It currently hosts more than 16 petabytes of data, including over 3,700 studies and 8,600 datasets. Jointly managed by the Centre for Genomic Regulation ( www.crg.eu) ) in Barcelona and the European Bioinformatics Institute (EMBL-EBI, www.ebi.ac.uk) in Cambridge, the EGA is an active partner in numerous international and national projects and contributes to establishing global standards in genomics and health research. It plays a central role as a core data resource for ELIXIR ( www.elixir-europe.org), a driver project of the Global Alliance for Genomics and Health (GA4GH, www.ga4gh.org ), and a major contributor to precision medicine initiatives. The EGA team at the CRG is a diverse group of around 25 professionals, including bioinformaticians, developers, helpdesk officers, and project managers, working across disciplines to advance biomedical data sharing. Based at the Barcelona Biomedical Research Park (PRBB, www.prbb.org), and supported by the Barcelona Supercomputing Center (BSC, www.bsc.es) and Universitat Pompeu Fabra (UPF, www.upf.edu ), the EGA provides advanced services to the international research community and continues to grow steadily in both scale and impact. Whom would we like to hire? Professional experience Must Have
* A degree in Law, with an advanced postgraduate degree in a relevant area such as health law, data protection, technology law, artificial intelligence governance, bioethics or biomedical data governance
* Research experience at the intersection of law, artificial intelligence, and data governance, including legal and ethical analysis of biomedical data sharing, AI regulation, and emerging governance frameworks
* Experience developing data access policies, data-sharing agreements, consent templates, and governance best practices, with a focus on translating complex legal and regulatory requirements into practical frameworks for health-sector and research stakeholders.
* Knowledge of legal and ethical issues surrounding the collection, access, sharing and secondary use of health, genomic or other sensitive research data
* Familiarity with the GDPR, European Health Data Space, EU AI Act and related European regulatory frameworks
* Ability to communicate legal and regulatory concepts effectively to audiences without a legal background
* Excellent written communication skills, including experience preparing policies, reports, guidance documents, agreements or scholarly outputs Nice to have:
* A doctorate or ongoing doctoral research related to health law, AI, technology governance, open science or data governance
* Qualification or professional experience as a lawyer
* Knowledge of international approaches to health-data governance and cross-border research data sharing
* Experience with organisations or initiatives working on standards for responsible genomic and health-data sharing, such as GA4GH or comparable international research infrastructures
* Academic publications, policy reports or presentations related to biomedical data governance, health law, artificial intelligence or open science Languages
* Excellent communication skills in English