Introductory description

Digital technologies and artificial intelligence are rapidly reshaping every aspect of our individual and collective lives. While most countries have committed to upholding the human right to the highest attainable standard of health, many still face challenges in fulfilling the Sustainable Development Goal (SDG) on health, including the commitment to “leave no one behind”. The digital transformation of health – including new systems of health data management, new platforms for telemedicine, the rise of artificial intelligence-driven diagnosis and information-sharing, and the proliferation of mHealth tools and apps, as well as the role of social media and social networks – all offer the possibility for resource-constrained governments to meet these goals. The digital transformation is rapidly changing access to information and services for health, but national and global digital health governance is at an early stage of development. The digital turn and the rise of AI also impose new challenges in upholding the right to health for people in their diversity.

This module explores how the digital transformation of health is shaping human rights, and how human rights are changing in turn, with special attention to the governance of health data, access to digital technologies, and the risks and benefits of artificial intelligence in diverse development and humanitarian interventions. It engages students in thinking through real-world application of human rights principles in diverse international case studies. Students will reflect on the changing meanings of human rights in the digital age, and on how human rights are reinterpreted and "translated" in local and trans-local contexts. They will collaborate to learn how to engage with the United Nations human rights system to promote the right to the highest attainable standard of health in the digital age, as well as reflecting on the challenges and the limitations of the human rights system, formed in the 20th century, to meet new and emerging challenges in the future.

Module web page

Module aims

Outline syllabus

This is an indicative module outline only to give an indication of the sort of topics that may be covered. Actual sessions held may differ.

Independent study: Introduction to the human right to health - Readings and videos introduce the international human rights framework, UN and regional human rights mechanisms, and how governments and civil society apply human rights in both governance and advocacy. In particular, students explore the normative content of the human right to the highest attainable standard of physical and mental health, and challenges for marginalised groups, with attention to some specific cases relevant to criminalisation, stigma, and discrimination; and consider applications of these norms to digital technologies and platforms.

Introduction to the digital transformation of health and digital health governance - What is the digital transformation of health, and who governs it? This session explores definitions of digital health, the transformation of health underway with new technologies and algorithmically-driven analysis and decision-making, and emerging digital health and data governance norms and mechanisms. It explores the relationship between ethics and rights, and the benefits and challenges with operationalising each.

• Group work: Applying human rights in practice - Participants will work in small groups to analyse cases drawn from diverse national contexts, and identify relevant human rights standards that may apply.
• The Digital Welfare State and digital divides - This session explores diverse access issues emerging in digital governance in low- and middle-income countries, particularly gender inequalities, age and geographic inequalities, and considers how these barriers could affect health service access. In particular it draws on specific cases in which digitisation created challenges for older persons and marginalised groups in Asia, Africa and the UK.

Health data governance - Overview to key international standards and principles of health data governance, as well as challenges with applying these in cross-border settings, drawing on some specific cases from East and Southern Africa.

• Group work: UN human rights submissions - Review of the process that led to the report of the UN Special Rapporteur on the Right to Health on digital technologies, innovation and the right to health, and the format used for submissions in response to her call for public input. Drawing on these examples and the small group work from day 1, participants will draft outlines for group submissions on their assigned topics for the UN Special Rapporteur on the Right to Health, and identify individual topics related to the group topic.

Digital Humanitarianism – Understand why humanitarian organisations need data on refugees, migrants and persons in displacement, the tools and technologies increasingly applied in interventions in humanitarian settings, the ethical and practical challenges to data-gathering and data protection, with reference to specific examples from two field sites.

Quantification and the uncounted - This session explores the challenges in gathering health data on stigmatised and marginalised populations, and how criminalisation and discrimination undermine equitable decision-making in the use of algorithms for public health priority-setting.

Artificial intelligence and algorithmic inequality - This session introduces how biases in data and in design of algorithms can create algorithmic inequality that affects health decisions, and the use of participatory approaches to AI, with reference to some specific cases.

The right to meaningful participation –- In this session, participants learn about the principles for meaningful participation in global health governance, their grounding in human rights, and explore how these principles could apply to different stages of digital innovation and governance, as well as some challenges with applying them in practice.

• Group work: Prep for UN human rights submission and presentations - Participants continue collaborative work on their UN human rights presentations, and begin to develop individual interventions and questions from “member states” for the mock hearing.

Closing workshop: Mock hearing and student presentations – In a mock hearing convened by the UN Human Rights Council, students will represent member states and civil society groups. They will present short collective verbal interventions to the UN Special Rapporteur on the Right to Health, and ask questions of one another from the perspective of diverse countries with varying positions on the issues.

Collective reflections on the process – A facilitated discussion with closing reflections on the process, and the meaning and application of human rights in the digital age.

Learning outcomes

By the end of the module, students should be able to:

• 1. Demonstrate an understanding of the digital transformation of health as an area of social and technical innovation that is both affected by and has an effect on human rights in diverse contexts
• 2. Demonstrate a conceptual and practical understanding of digital health governance
• 3. Demonstrate mastery of human rights principles and standards that apply to health-related technology and that can affect the design and implementation of digital interventions for health in diverse settings
• 4. Reflect on human rights issues that are emergent in the design and governance of data, digital technologies and artificial intelligence in the context of global health
• 5. Offer policy recommendations grounded in evidence and human rights norms, and develop approaches to integrating human rights into the design, implementation and evaluation of digital health strategies, frameworks and policies
• 6. Prepare submissions suitable for United Nations human rights mechanisms

Indicative reading list

Achiume, E. Tendayi. ‘Racial Discrimination and Emerging Digital Technologies: A Human Rights Analysis: Report of the Special Rapporteur on Contemporary Forms of Racism, Racial Discrimination, Xenophobia and Related Intolerance*’. United Nations, 18 June 2020. https://undocs.org/pdf?symbol=en/A/HRC/44/57.

Alston, Philip. ‘Report of the Special Rapporteur on Extreme Poverty and Human Rights**’. United Nations, 11 October 2019. https://docs.google.com/document/d/1ESq1NJzkpTorjtNB-yGWVF_Qh8fxJUfk/edit.

Bonilla, Yarimar, and Jonathan Rosa. ‘#Ferguson: Digital Protest, Hashtag Ethnography, and the Racial Politics of Social Media in the United States’. American Ethnologist 42, no. 1 (2015): 4–17. https://doi.org/10.1111/amet.12112.

Buchholz, Beth A., Jason DeHart, and Gary Moorman. ‘Digital Citizenship During a Global Pandemic: Moving Beyond Digital Literacy’. Journal of Adolescent & Adult Literacy 64, no. 1 (17 July 2020): 11–17. https://doi.org/10.1002/jaal.1076.

Bustreo, Flavia, Stefan German, and Kate Gilmore. ‘Respecting, Protecting, and Fulfilling the Health and Human Rights of Youth in Digital Spaces - ScienceDirect’. The Lancet Child & Adolescent Health 6, no. 1 (2022). https://www.sciencedirect.com/science/article/pii/S2352464221003722?via%3Dihub.

CESCR General Comment 14 The Right to the Highest Attainable Standard of Health, Pub. L. No. E/C.12/2000/4, § 22nd Session of CESCR (2000).

Corrêa, Nicholas Kluge, Camila Galvão, James William Santos, Carolina Del Pino, Edson Pontes Pinto, Camila Barbosa, Diogo Massmann, et al. ‘Worldwide AI Ethics: A Review of 200 Guidelines and Recommendations for AI Governance’. Patterns 4, no. 10 (October 2023): 100857. https://doi.org/10.1016/j.patter.2023.100857.

Davis, Sara L. M., ed. The Uncounted: Politics of Data in Global Health. Cambridge Studies in Law and Society. Cambridge: Cambridge University Press, 2020.

Davis, Sara L.M., Allan Maleche, and Key Populations Consortium. ‘“Everyone Said No” Biometrics, HIV and Human Rights A Kenya Case Study’. Kelin, 2018. https://www.kelinkenya.org/wp-content/uploads/2018/07/%E2%80%9CEveryone-said-no%E2%80%9D.pdf.

Davis SLM, Pham T, Kpodo I, et al Digital health and human rights of young adults in Ghana, Kenya and Vietnam: a qualitative participatory action research study BMJ Global Health 2023;8:e011254.

Heidari, Shirin, and Heather Doyle. ‘VIEWPOINT An Invitation to a Feminist Approach to Global Health Data’. Health and Human Rights Journal (blog), 8 December 2020. https://www.hhrjournal.org/2020/12/viewpoint-an-invitation-to-a-feminist-approach-to-global-health-data/.

Hinton, Rachael, Ulla Jasper, and Siddhartha Jha. ‘Moving beyond Tokenism in Our Approach to Human Rights in Digital Health’. BMJ 375 (22 November 2021): n2873. https://doi.org/10.1136/bmj.n2873.

Holly, Louise. ‘Health in the Digital Age: Where Do Children’s Rights Fit In?’ Health and Human Rights 22, no. 2 (December 2020): 49–54.

Joshi, Naveen. ‘The Relationship Between AI And Human Rights’. Forbes. Accessed 9 November 2021. https://www.forbes.com/sites/naveenjoshi/2021/10/20/the-relationship-between-ai-and-human-rights/.

Kaye, David. ‘Promotion and Protection of the Right to Freedom of Opinion and Expression***’. United Nations, 29 August 2018. https://documents-dds-ny.un.org/doc/UNDOC/GEN/N18/270/42/PDF/N1827042.pdf?OpenElement.

Kuntsman, Adi, Esperanza Miyake, and Sam Martin. ‘Re-Thinking Digital Health: Data, Appisation and the (Im)Possibility of “Opting Out”’. Digital Health 5 (9 October 2019): 2055207619880671. https://doi.org/10.1177/2055207619880671.

Malomalo, Maria. ‘The Power of Social Media in Fueling Young Feminist Movements’, 10 July 2023. https://www.devex.com/news/opinion-the-power-of-social-media-in-fueling-young-feminist-movements-105840.

Nemer, David. Technology of the Oppressed: Inequity and the Digital Mundane in Favelas of Brazil. The MIT Press, 2022. https://direct.mit.edu/books/oa-monograph/5266/Technology-of-the-OppressedInequity-and-the.

Seaver, Nick. ‘What Should an Anthropology of Algorithms Do?’ Chicago, IL, 2013. http://nickseaver.net/papers/seaverAAA2013.pdf.

Sekalala S, Chatikobo T. Colonialism in the new digital health agenda BMJ Global Health 2024;9:e014131.

Shaw, James, and Sharifah Sekalala. ‘Health Data Justice: Building New Norms for Health Data Governance.’ Npj Digit. Med. 6, no. 30 (2023).

Shift and Institute for Human Rights and Business. ‘ICT Sector Guide on Implementing the UN Guiding Principles on Business and Human Rights’. European Commission, 2011. https://www.ihrb.org/pdf/eu-sector-guidance/EC-Guides/ICT/EC-Guide_ICT.pdf.

Srinivasan, Ramesh. Whose Global Village? Rethinking How Technology Shapes Our World. New York, New York: New York University Press, 2017.

STOPAIDS. The Principles of Meaningful Involvement of Communities and Civil Society in Global Health Governance. Report, 2023. https://stopaids.org.uk/resources/6076/.

Trascasas, Milena Costas. “Assessing the Human Rights Impact of Neurotechnology.” Human Rights Council Advisory Committee no. 28, 2022.

United Nations Office Geneva. ‘The Gender Digital Divide Is a Reflection of the Overall Discrimination Faced by Women and Girls, High Commissioner for Human Rights Tells Human Rights Council’. UN Geneva, 2021. https://www.ungeneva.org/en/news-media/meeting-summary/2021/09/la-fracture-numerique-entre-les-sexes-est-le-reflet-de-la.

UN Human Rights Council. Digital innovation, technologies and the right to health. A/HRC/53.65. Report by the UN Special Rapporteur on the Right to Health. 21 April 2023. https://www.ohchr.org/en/documents/thematic-reports/ahrc5365-digital-innovation-technologies-and-right-health#:~:text=The%20Special%20Rapporteur%20shares%20the,%2C%20accountability%2C%20reparations%20and%20privacy.

UN Human Rights Council. ‘Promotion and Protection of Human Rights on the Internet’. UN General Assembly, 16 July 2012. https://doi.org/10.1163/2210-7975_HRD-9970-2016149.

Wagner, Ben, Matthias C. Kettemann, and Kilian Vieth. Research Handbook on Human Rights and Digital Technology: Global Politics, Law and International Relations. Research Handbooks in Human Rights Series. Cheltenham, Gloucestershire: Edward Elgar Publishing, Edward Elgar Publishing Limited, 2019.

Were, Martin C, Chaitali Sinha, and Caricia Catalani. ‘A Systematic Approach to Equity Assessment for Digital Health Interventions: Case Example of Mobile Personal Health Records’. Journal of the American Medical Informatics Association 26, no. 8–9 (1 August 2019): 884–90. https://doi.org/10.1093/jamia/ocz071.

West, Sarah Myers; Meredith Whittaker, and Kate Crawford. Discriminating Systems: Gender, Race and Power in AI. AI Now report, April 2019. https://ainowinstitute.org/publication/discriminating-systems-gender-race-and-power-in-ai-2.

WHO. ‘Ethics and Governance of Artificial Intelligence for Health’. Accessed 9 March 2022. https://www.who.int/publications-detail-redirect/9789240029200.

Research element

Collaborative research to develop a group presentation on a specific human rights issue affecting digital health (such as privacy), followed by an individual research paper on some specific aspect of that issue in more depth (for example, about the risks to privacy in digital contact tracing apps)

Interdisciplinary

Social science, law, and public health concepts and literatures will be combined

International

The module focuses on global health, with an emphasis on diverse low- and middle-income country contexts

Subject specific skills

• Demonstrate an understanding of the digital transformation of health as an area of social and technical innovation that is both affected by and has an affect on human rights in diverse contexts
• Demonstrate a conceptual and practical understanding of digital governance, data governance and the governance of artificial intelligence for health;
• Demonstrate mastery of human rights principles and standards that apply to health-related technology, and understanding of how key human rights, racial, gender and other considerations, including geopolitical inequalities, are being affected by the digital transformation, and can in turn affect implementation of digital interventions for health in diverse settings;
• Reflect on new and emerging future human rights issues in governance of digital technologies and artificial intelligence in the context of global health

Transferable skills

• Critically evaluate digital health interventions from the perspective of gender, equity and human rights, analyzing strengths and gaps;
• Keeping notes
• Meeting regular deadlines
• Demonstrate time management skills
• Demonstrate ability to work in a team
• Participate in class discussions
• Offer policy recommendations grounded in evidence and human rights norms;
• Prepare submissions in format and style appropriate for UN human rights mechanisms