Health Data Sharing and Governance specialist

Centre for Genomic Regulation; Barcelona; Hybrid; EUR 60,000 - 90,000; Full time

Benefits offered by this job

Extended vacation period

Flexible working hours

Career development opportunities

Job summary

The Centre for Genomic Regulation (CRG) in Barcelona seeks a Health Data Sharing and Governance Specialist to shape legal and ethical frameworks for responsible genomic data sharing. You will translate complex regulations into practical data-access policies, agreements and consent templates for researchers and data access committees.

Collaborating with EGA teams and international partners, you will contribute to AI governance considerations and European projects on health data sharing, while

Qualifications

• Must have law degree with advanced postgraduate in health law, data protection, tech law, AI governance, bioethics or data governance.
• Research at the intersection of law, AI and data governance; analysis of biomedical data sharing and AI regulation.
• Experience developing data access policies, data-sharing agreements, consent templates and governance frameworks.
• Knowledge of GDPR, European Health Data Space, EU AI Act and related regulatory frameworks.
• Ability to communicate legal concepts to non-legal audiences; strong written communication skills.

Responsibilities

• Provide legal and governance expertise on access, sharing, processing and secondary use of biomedical data.
• Analyze regulatory requirements and translate them into practical approaches for EGA services.
• Develop data access policies, data-use agreements, consent templates and governance guidance.
• Collaborate with EGA teams, EMBL-EBI and international partners on governance issues.
• Contribute to European projects related to health data, federated infrastructures and AI governance.

Skills

Data governance

AI governance

Regulatory analysis

Policy writing

Cross-disciplinary collaboration

Education

Law degree

Postgraduate degree in health law / data protection / AI governance

Job description

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 (written and spoken), as it is the language used by the team

Competence

• Strong analytical and legal reasoning skills


• Ability to translate regulatory requirements into clear and implementable operational solutions


• Ability to work effectively across legal, scientific, technical and policy disciplines


• Comfortable collaborating with researchers, bioinformaticians, software developers, data stewards and legal or ethics specialists


• Proactive and pragmatic approach to problem solving


• Ability to work independently while contributing effectively to collaborative projects


• Curiosity and willingness to engage with rapidly evolving areas of biomedical research, AI and data regulation

What Will You Do?

Legal and Data Governance

• Provide legal and governance expertise on the access, sharing, processing and secondary use of genomic, phenotypic and biomedical data, including controlled-access, federated and cross-border data-sharing models.


• Analyse and interpret legal, ethical and regulatory requirements and translate them into practical approaches for EGA services and research-data infrastructures, including developments in data protection, health-data reuse and AI regulation.


• Develop and maintain data access policies, data-sharing and data-use agreements, consent templates, governance guidance, SOPs and frameworks for documenting data-use conditions and access restrictions.

AI Emerging Regulation

• Analyse how AI governance requirements interact with data access, consent, transparency, accountability and research ethics.


• Contribute legal and governance expertise to AI-related projects and produce policy analyses, guidance and practical recommendations for responsible use of AI in biomedical research.

Collaboration and European Projects

• Collaborate closely with EGA teams at CRG and EMBL-EBI, as well as legal, ethical, scientific and technical experts from international partner organisations.


• Participate in European-funded and international projects related to health data, genomics, federated infrastructures, AI and data governance.


• Contribute to project deliverables, policy documents, governance frameworks, workshops and working groups, in the frame of SCAILED project, among others

The Offer – Working Conditions

• Contract duration: Technical and scientific activities contract linked to the project (estimated until 30/09/2029).


• Schedule: Full-time, hybrid model available


• Estimated annual gross salary: Salary is commensurate with qualifications and consistent with our pay scales


• Target start date: As soon as possible

We provide a highly stimulating environment with state-of-the-art infrastructures, and unique professional career development opportunities. To check out our training and development portfolio, please visit our website in the training section .

We offer and promote a diverse and inclusive environment and welcomes applicants regardless of age, disability, gender, nationality, ethnicity, religion, sexual orientation or gender identity.

The CRG is committed to reconcile a work and family life of its employees and are offering extended vacation period and the possibility to benefit from flexible working hours.

Suggestions: The CRG believes in ongoing improvement and promotes a culture of feedback. This is one of the reasons we have in place, at your disposal as a candidate, a mechanism to gather your suggestions/complaints concerning your candidate experience in our recruitment processes. Your feedback really matters to us in our aim at creating a positive candidate journey. You can make a difference and help us improve by letting us know your suggestions through the following form .

This project has received funding from the European Union's Horizon Europe under the grant agreement No 101314097\"