Ethical and interoperable data and AI governance for health, crisis response, and digital public infrastructure
Good Clinical Practice Alliance (GCPA); Strategic Initiative for Developing Capacity in Ethical Review (SIDCER); Centre for AI Capacity Building in Genomics, Health Data, and Responsible Research Systems (AI4GHR); Human Genome Project II (HGP2); Centre for AI Capacity Building in Responsible Research, Responsible Assessment, and Responsible Publication in Science (CAI3R-science); European Open Science Cloud Future / Research Data Alliance Artificial Intelligence and Data Visitation Working Group (EOSC-Future/RDA AIDV); African Open Science Platform (AOSP)
Session 268
The WSIS+20 review and resolution A/RES/80/173 call for a move from principles to implementation in the governance of data and artificial intelligence. This session asks how that move can be delivered where the stakes are highest, in health, genomics, crisis response, and the scientific systems that underpin them. It brings together researchers, ethicists, and open science leaders from Africa, Asia, and Europe, together with global research data networks, to show how human-centred, rights-based, and interoperable governance can be built into research infrastructure rather than added afterwards. A central thread is data visitation, the practice of bringing analysis to data held in secure environments rather than moving the data, and the ethical, legal, and sovereignty questions it raises for global south communities.
The session draws on a body of implementable work. The EOSC-Future/RDA Artificial Intelligence and Data Visitation Working Group (AIDV), work done by the Good Clinical Practice Alliance (GCPA) and the Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) with the World Health Organization (WHO) have produced formal critical groundwork. These include the AIDV citable recommendations on informed consent, ethics committee review, secure processing environments, an AI bill of rights, and the first global guidance on data visitation. The Global Ethics and Regulatory Preparedness for Emerging Health Technologies (GERP) project equips ethics committees and health regulators to review AI, data visitation, genomics, and other emerging health technologies, including research during times of crisis, across diverse legal and language systems and without excluding any country. The UNESCO Open Science Toolkit instruments on 'Developing data policies for times of crisis facilitated by open science (DPTC)' offer tested guidance for data governance under public health emergencies, disasters, and conflict and war conditions. The Human Genome Project II (HGP2), endorsed by UNESCO under the UN International Decade of Sciences for Sustainable Development (UN IDSSD, 2024-2033), provides a participatory and equitable model for precision public health across income levels. The African Open Science Platform (AOSP) anchors these questions in African-led, federated open science infrastructure. Work on responsible research assessment through CoARA-ERIP and its SE4RA self-evaluation project, also UNESCO-endorsed for the UN IDSSD, connects ethics and integrity to how research is valued.
This session also launches two new centres of the Global Network of Centres for Exchange and Cooperation on AI Capacity Building (AICBC), supported by the UN Office for Digital and Emerging Technologies (UN-ODET): the Centre for AI Capacity Building in Genomics, Health Data, and Responsible Research Systems (AI4GHR), based at SMU in Singapore, and the Centre for AI Capacity Building in Responsible Research, Responsible Assessment, and Responsible Publication in Science (CAI3R-science), based at UCP in Portugal.
Looking to WSIS beyond 2026 and towards 2035, the organizers propose that responsible, sovereignty-aware data and AI governance become standard infrastructure for health and science, sustained through capacity building in the global south, interoperable frameworks aligned with the Global Digital Compact, and measurable Action Line roadmaps. The session is designed to complement the sessions that follow it on sovereign and community-controlled health data, contributing shared governance foundations to that discussion.
Francis P. Crawley is a philosopher, ethicist, and digital policy expert. He is the principal investigator and co-chair of the EOSC-Future/RDA Artificial Intelligence and Data Visitation Working Group (AIDV-WG), and Co-Chari and Coordinator of the CoARA-ERIP working group on ethics and research integrity in responsible research assessment for data and AI. He leads the Good Clinical Practice Alliance (GCPA) and the Strategic Initiative for Developing Capacity in Ethical Review (SIDCER). He initiated, conceptualised, and was the principal author of the UNESCO Open Science Toolkit contributions on 'Developing Data Policies for Times of Crisis Facilitated by Open Science'. His work spans Europe, Africa, Asia, and the America's on data sovereignty, open science, indigenous data rights, and human-centred governance of AI in health and science.
Dr. Tshiamo Motshegwa is Director of the African Open Science Platform (AOSP), hosted by South Africa's National Research Foundation, where he leads pan-African efforts to build open, federated, and equitable research data infrastructure. His work connects African researchers and institutions to global open science while keeping African priorities, data governance, and capacity building at the centre. He brings a global south perspective on how open science and AI can serve the continent on sovereign and interoperable terms.
Professor Cheong Wei Yang is Vice-Provost for Strategic Research Partnerships at Singapore Management University, with a distinguished career across academia and government that included a lead national role in Singapore's Covid-19 response. He is establishing the Centre for AI Capacity Building in Genomics, Health Data, and Responsible Research Systems (AI4GHR) in Singapore, as part of the Global Network of Centres for Exchange and Cooperation on AI Capacity Building (AICBC) supported by UN-ODET. He is a long-standing collaborator in the Human Genome Project II (HGP2).
Professor Mara de Sousa Freitas is Director of the Institute of Bioethics at the Faculty of Medicine of the Universidade Católica Portuguesa (UCP) in Portugal. She is establishing the Centre for AI Capacity Building in Responsible Research, Responsible Assessment, and Responsible Publication in Science (CAI3R-science), building on UCP's role in responsible research assessment, including the CoARA Boost SE4RA project on ethics-centred self-evaluation. Her work brings bioethics and research integrity into the assessment and publication of AI-enabled science.
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C1. The role of governments and all stakeholders in the promotion of ICTs for development
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C3. Access to information and knowledge
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C4. Capacity building
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C6. Enabling environment
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C7. ICT applications: benefits in all aspects of life — E-government
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C7. ICT applications: benefits in all aspects of life — E-learning
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C7. ICT applications: benefits in all aspects of life — E-employment
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C7. ICT applications: benefits in all aspects of life — E-environment
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C7. ICT applications: benefits in all aspects of life — E-agriculture
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C7. ICT applications: benefits in all aspects of life — E-science
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C10. Ethical dimensions of the Information Society
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C11. International and regional cooperation
Mapping to the WSIS Action Lines
The session maps to Action Lines defined in the WSIS Geneva Plan of Action (document WSIS-03/GENEVA/DOC/5-E, 12 December 2003) and grounded in the Geneva Declaration of Principles (WSIS-03/GENEVA/DOC/4-E, 12 December 2003), which recognises the central role of science in the Information Society (Declaration paragraph 7). These commitments were reaffirmed in the Tunis Agenda for the Information Society (WSIS-05/TUNIS/DOC/6(Rev.1)-E, 2005) and are now carried into implementation under the WSIS+20 review outcome (UN General Assembly resolution A/RES/80/173, December 2025) and the Global Digital Compact (2024).
Its core is Action Line C7. On e-health (Geneva Plan of Action, paragraph 18), the session operationalises the calls for reliable, high quality and affordable health information systems that protect privacy (18a), international standards for the exchange of health data (18d), and ICT-based support for medical and humanitarian assistance in disasters and emergencies (18f), applying them to genomics and precision public health through data visitation and secure processing environments. GERP and the DPTC instruments extend paragraph 18f to research during public health emergencies, disasters, and conflict. On e-science (paragraph 22), the session advances affordable connectivity and networking for research institutions (22a), open access on an equitable basis (22b), the long-term preservation of scientific data (22d), and metadata standards for its effective use (22e), giving effect as well to the Declaration commitment to universal access to scientific knowledge and open access publishing (Declaration paragraph 28). The African Open Science Platform, the AIDV data visitation work, and FAIR-aligned stewardship put these into practice for the global south.
The launch of the AI4GHR and CAI3R-science centres under the AICBC network and UN-ODET responds directly to Action Line C4 on capacity building (paragraph 11), in particular the creation of a critical mass of qualified professionals (11e) and regional and international cooperation to strengthen capacity in developing countries and least developed countries (11j and 11m).
The ethics and governance work serves three further lines. It addresses Action Line C10 on the ethical dimensions of the Information Society (paragraph 25), including awareness of the ethics of ICT use (25b), protection of privacy and personal data (25c), and continued research on ethical dimensions (25d), through the AIDV recommendations on informed consent and ethics committee review and through GERP. It supports Action Line C5 on confidence and security (paragraph 12) by protecting data integrity (12a) and privacy (12c and 12f) through privacy-preserving, sovereignty-aware data visitation. It serves Action Line C3 on access to information and knowledge (paragraph 10) through open access to scientific information and open archives (10i). GERP's regulatory and ethics preparedness advances Action Line C6 on the enabling environment (paragraph 13), including frameworks for the secure storage and archival of records (13h).
Finally, connecting African, Asian, and European institutions in a shared, interoperable framework realises Action Line C11 on international and regional cooperation (paragraph 26), including public-private partnership (26b) and mainstreaming ICTs to bridge the digital divide (26c), while the multistakeholder and sovereignty-aware design reflects Action Line C1 (paragraph 8), including the exploration of multistakeholder mechanisms for indigenous peoples (8f), a point of direct continuity with the sessions that follow on indigenous and community-controlled health data. The session thus carries these Geneva Plan of Action commitments from principle to implementation within the facilitation framework set by the Tunis Agenda (paragraph 109), under which WHO facilitates C7 e-health and UNESCO facilitates C7 e-science.
Mapping to the UN Global Digital Compact
The session maps directly to the UN Global Digital Compact (GDC), adopted on 22 September 2024 as Annex I of the Pact for the Future (UN General Assembly resolution A/RES/79/1), which reaffirms the WSIS Geneva Declaration and Plan of Action and the Tunis Agenda as its foundation. It advances GDC Objective 4 on responsible, equitable, and interoperable data governance, whose paragraph 48 commits states to interoperability between national, regional, and international data policy frameworks and tasks the UN Commission on Science and Technology for Development (CSTD) with a multistakeholder Working Group on Data Governance at All Levels, reporting by the eighty-first session of the General Assembly. The session's data visitation architecture, secure processing environments, and attention to data sovereignty and the CARE principles offer working practice for exactly these questions of interoperability, benefit-sharing, and safe and trusted data flows. It also advances GDC Objective 5 on the international governance of AI for the benefit of humanity, under which the General Assembly established the Independent International Scientific Panel on AI and the Global Dialogue on AI Governance (terms of reference in resolution A/RES/79/325, 26 August 2025), the first Dialogue convening in Geneva in July 2026 alongside this Forum. Through the launch of the AI4GHR and CAI3R-science centres, the session further serves GDC Objective 1 on closing digital divides, including the Compact's commitment to build capacities, especially in developing countries, to access, develop, use, and govern AI systems, and Objective 3 on a rights-respecting, safe, and secure digital space through its work on informed consent and ethics review.
Mapping to the work of UN-ODET
The session maps to the mandate of the UN Office for Digital and Emerging Technologies (UN-ODET), established on 1 January 2025 following the General Assembly's decision of 24 December 2024 and led by Under-Secretary-General and Special Envoy Amandeep Singh Gill, which serves as the UN system focal point for digital issues and leads follow-up on the Global Digital Compact. UN-ODET's central concern, that without deliberate capacity building resource-constrained countries risk becoming consumers rather than co-creators of technologies designed elsewhere, is the concern this session acts on by launching two capacity-building centres, AI4GHR and CAI3R-science, within the Global Network of Centres for Exchange and Cooperation on AI Capacity Building (AICBC) supported by UN-ODET. The session aligns with UN-ODET's coordinating role across the UN system, including its co-leadership with ITU and UNESCO of the AI workstream of the Working Group on Digital Technologies and its secretariat role for the Global Dialogue on AI Governance and the Independent International Scientific Panel on AI. It also responds to the Secretary-General's report on innovative voluntary financing options for AI capacity building (A/79/966, 2 July 2025) by demonstrating a concrete, institution-based model for building genomics, health data, and responsible research capacity in the global south.
Mapping to recent WHO outcomes on digital health and precision medicine
The session maps to recent World Health Organization outcomes on digital health and precision medicine. WHO is the lead facilitator, with ITU, of WSIS Action Line C7 on e-health, and at the Seventy-eighth World Health Assembly it secured the extension of the Global Strategy on Digital Health 2020-2025 to 2027 and a mandate to develop the successor strategy for 2028-2033, expressly aligned with the Pact for the Future and the Sustainable Development Goals (decision WHA78(22), 23 May 2025). The session contributes the governance instruments this strategy will need as AI and data-intensive methods enter health systems, including data visitation, secure processing environments, informed consent, and ethics review. On precision medicine, the Seventy-ninth World Health Assembly adopted a resolution on precision medicine (WHA79.8, 2026) recognising it as a shift towards predictive, preventive, and participatory health systems built on genomic and molecular profiling, and calling for ethical, equitable, and cost-effective implementation with particular attention to low- and middle-income countries. This is the policy space of the Human Genome Project II and the AI4GHR centre, and the session offers the ethics, consent, data governance, and capacity-building foundations that equitable precision public health requires.
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Goal 3: Ensure healthy lives and promote well-being for all
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Goal 4: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all
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Goal 5: Achieve gender equality and empower all women and girls
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Goal 9: Build resilient infrastructure, promote sustainable industrialization and foster innovation
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Goal 10: Reduce inequality within and among countries
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Goal 13: Take urgent action to combat climate change and its impacts
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Goal 15: Sustainably manage forests, combat desertification, halt and reverse land degradation, halt biodiversity loss
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Goal 16: Promote just, peaceful and inclusive societies
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Goal 17: Revitalize the global partnership for sustainable development
The session contributes directly to the 2030 Agenda for Sustainable Development (UN General Assembly resolution A/RES/70/1, 25 September 2015) and to the International Decade of Sciences for Sustainable Development (IDSSD, 2024-2033), proclaimed by resolution A/RES/77/326 on 25 August 2023 with UNESCO as lead agency, under which the Human Genome Project II and the SE4RA responsible research assessment project are UNESCO-endorsed initiatives. It aligns with the ITU WSIS-SDG Matrix, which links each WSIS Action Line to the Sustainable Development Goals, and it feeds the science and evidence base of the IDSSD ahead of the Science Decade Global Conference in July 2026.
Its clearest contribution is to Goal 3 on good health and well-being. The genomics and precision public health work serves targets 3.4 on reducing premature mortality and promoting well-being, 3.8 on universal health coverage, 3.b on research and development for health and equitable access to it, and 3.d on strengthening capacity for early warning, risk reduction, and management of health risks, which the GERP and DPTC crisis-research instruments address directly. The AI4GHR and CAI3R-science centres serve Goal 4 on quality education, in particular targets 4.3 and 4.4 on equitable access to tertiary and technical education and on building the professional and technical skills that AI, data, and responsible research systems require.
The open science and data governance work serves Goal 9 on industry, innovation and infrastructure, through target 9.5 on enhancing scientific research and upgrading technological capabilities and target 9.c on access to information and communications technology. The global south focus and the emphasis on data sovereignty serve Goal 10 on reduced inequalities, in particular target 10.2 on empowering and promoting the inclusion of all irrespective of status. The ethics review, informed consent, and governance work serves Goal 16 on peace, justice and strong institutions, through target 16.6 on effective, accountable, and transparent institutions, target 16.7 on inclusive and participatory decision-making, and target 16.10 on public access to information.
Finally, the session is built on Goal 17 on partnerships for the goals. Connecting African, Asian, and European institutions and launching UN-supported capacity centres serves target 17.6 on science, technology and innovation cooperation and knowledge sharing, targets 17.7 and 17.8 on technology transfer and capacity building for developing and least developed countries including the use of ICT, targets 17.16 and 17.17 on multistakeholder and public, private and civil society partnerships, and target 17.18 on capacity building for high-quality, timely, and disaggregated data. In this way the session moves from the WSIS Action Lines, through the Global Digital Compact, to concrete SDG delivery, consistent with the Pact for the Future's commitment to accelerate the 2030 Agenda.
Cited links
2030 Agenda for Sustainable Development (A/RES/70/1): https://sdgs.un.org/2030agenda
The 17 Goals and their targets: https://sdgs.un.org/goals
International Decade of Sciences for Sustainable Development (IDSSD, 2024-2033; resolution A/RES/77/326): https://www.un-sciences-decade.org/
Human Genome Project II, endorsed IDSSD initiative: https://www.un-sciences-decade.org/en/endorsed-activities/human-genome-project-ii-hgp2-delivering-precision-public-health-humanity
ITU WSIS and SDG linkage (WSIS-SDG Matrix, via the ITU WSIS gateway): https://www.itu.int/en/itu-wsis/Pages/default.aspx
- Objective 1: Close all digital divides and accelerate progress across the Sustainable Development Goals
- Objective 2: Expand inclusion in and benefits from the digital economy for all
- Objective 3: Foster an inclusive, open, safe and secure digital space that respects, protects and promotes human rights
- Objective 4: Advance responsible, equitable and interoperable data governance approaches
- Objective 5: Enhance international governance of artificial intelligence for the benefit of humanity
AIDV-WG (RDA): https://www.rd-alliance.org/groups/artificial-intelligence-and-data-visitationaidv-wg/activity/
HGP2 (UN science decade endorsed activity): https://www.un-sciences-decade.org/en/endorsed-activities/human-genome-project-ii-hgp2-delivering-precision-public-health-humanity
CoARA working groups (including ERIP): https://www.coara.org/wg-nc/working-groups/
AIDV formal outputs (Zenodo DOIs): AI bill of rights 10.15497/RDA00123; informed consent 10.15497/RDA00121; ethics committees 10.15497/RDA00122; secure processing environments 10.15497/RDA00129; DV4RDA templates 10.15497/RDA00142 and 10.15497/RDA00143.