My research agenda weaves through concerns with visibility, quantification and human rights. This work draws on my experience as both an anthropologist and a human rights advocate working in collaboration with activists in diverse settings to reflect on the collision between qualitative, legal and quantitative forms of knowledge, and on how to disrupt and shift power in the current digital transformation. Above all, I’m always interested in how to take these abstract questions and make them useful to activists, students and scholars.
Digital Health and Rights: A Participatory Action Research Project
While new technologies and artificial intelligence (AI) could transform weak health systems in low-resource settings, human rights experts have highlighted real threats to privacy, equality, and autonomy. These risks are greater for youth and for marginalised, criminalised groups, such as people living with HIV, migrants, women and girls, and key populations vulnerable to HIV and tuberculosis – who rarely have input into the policy decisions that shape what kinds of data are gathered about them, by whom, and how that data is used or managed.
I am principal investigator of this consortium project, which includes the Global Network of People Living with HIV (GNP+), STOPAIDS, KELIN, and researchers at BRAC University, Universidad de los Andes, and the University of Oslo. We are working together using a participatory action research approach to develop five country case studies on digital health and human rights of young adults, and to reflect on the results for policy and action. Our focus countries include Bangladesh, Colombia, Ghana, Kenya, and Vietnam. See more here and subscribe to our mailing list:
- Special journal issue co-edited with Carmel Williams: “Big data, technology, artificial intelligence and the right to health.” Health and Human Rights Journal, vol. 22 no. 2, December.
- Our consortium working papers, blogs and articles are all online here.
Human rights and the Pandemic Treaty
What human rights need to be upheld in any future pandemic lawmaking, and what should the role of those most affected by pandemics be in future pandemic governance mechanisms? Working in collaboration with a network of civil society activists and drawing on human rights standards and principles, as well as the experience of the HIV sector, I’m interested to explore how future pandemic lawmaking can address inequalities through transparency, accountability, and by centering the voices of women, marginalized groups, and others who have been disproportionately impacted by the pandemic.
- The right to participation in global health governance: Lessons learned, with Mike Podmore and Courtenay Howe. Verfassungsblog, 21 October 2021.
- An international pandemic treaty must centre on human rights, with Philip Alston, Joseph J. Amon, Edwin J. Bernard, Sarah M. Brooks, Gian Luca Burci, Naomi Burke-Shyne, Georgina Caswell, Mikhail Golichenko, Anand Grover, Sophie Harman, Lu Jun, Rajat Khosla, Kyle Knight, Allan Maleche, Tlaleng Mofokeng, Moses Mulumba, Sandeep Nanwani, Mike Podmore, Dainius Puras, Nina Sun and Nerima Were. BMJ, 10 May 2021.
Aid accountability: The case of the Global Fund
As a scholar and practitioner, I have worked extensively on the practical question of the obligations overseas development agencies have to address human rights and gender equality their financing:
- “Human rights and the Global Fund to Fight AIDS, TB and Malaria“, Health and Human Rights Journal 2014, 16/1
The Uncounted: Politics of data in global health
This project explored the politics of quantification in health aid, focusing on data paradoxes in finance: how aid agencies’ priorities may be mis-shaped by data poverty for marginalized, criminalized or invisibilized groups.
- The Uncounted: Politics of Data in Global Health, Cambridge University Press 2020 – Named a book of the year by International Affairs
- “The uncounted: Politics of data and visibility in global health.” International Journal of Human Rights: Sustainable Development Goals and human rights special issue, ed. Inga Winkler. Winner of the International Geneva Award 2017
- “The uncounted: People left out of health data” – TedX talk 2021
Human rights in China
From 2002 to 2012, I worked as a frontline human rights researcher and activist, first for Human Rights Watch and then as founder of Asia Catalyst, which trained hundreds of Chinese and Southeast Asian community leaders in human rights documentation, advocacy, and nonprofit governance skills. My work included numerous human rights reports, most co-authored with Asian rights activists. This work focused on closing civic space for AIDS activists, the HIV blood scandal, the rights of rural petitioners, and community-led advocacy in China:
- “The surprising persistence of human rights defenders in China.” In M. Foblets, M. Goodale, M. Sapignoli, O. Zenker, eds. The Oxford Handbook of Law and Anthropology. Oxford University Press, 2020
- Co-authored with Charmain Mohamed. “Global rights, local risk: Community advocacy on right to health in China.” In Tine DeStrooper and Sally E. Merry, eds., Human rights transformation in an unequal world. Philadelphia: University of Pennsylvania Press, 2018.
Ethnic revival on China’s southwest borders
My doctoral disseration from 1999, republished as a book, drew on in-depth ethnographic research among Chinese ethnic Tai Lüe Buddhist monks, singers and young people to show how they negotiated public and private boundaries. Moving between China and Myanmar, I explored how they also criss-crossed national borders in order to revive long-suppressed songs, language, and visual arts, all under the all-seeing gaze of the state.
- Song and silence: Ethnic revival on China’s southwest borders, Columbia University Press 2005.
- “Premodern flows in postmodern China: Globalization and the Sipsongpanna Tais” Modern China 2003