How are inequality and discrimination shaping data about COVID-19, and who is being left invisible and uncounted? On the launch of her new book on data and human rights, Sara (Meg) Davis speaks to social worker and rights activist Jolovan Wham in Singapore, who describes how thousands of migrant workers are being detained in overcrowded dorms, and were missed by the official mobile contact tracing app. In Geneva, Dr. Shirin Heidari (GENDRO) and Marina Smelyanskaya (Stop TB Partnership) address the global need for feminist principles and respect for human rights to gather data on COVID-19. Davis’ new book, The Uncounted: Politics of Data in Global Health is available from Cambridge University Press.
Category Archives: Data
The Uncounted book is out
The Uncounted: Politics of Data in Global Health publishes today with Cambridge University Press. It’s been a long journey to get here, and you can read the first chapter here. For a 20% discount, type in DAVIS2020 at checkout. A more affordable paperback will be out later this year.
The Uncounted: Pre-order the hardcover
The Uncounted: Politics of Data in Global Health is now available for pre-order in hardcover edition – it comes out in June. Please share with your library.
There will be an e-book too, and a paperback eventually, as well as public events.
More updates to follow soon.
A democracy deficit in digital health?
From Health and Human Rights, January 16, 2020
By Sara L. M. Davis, Kenechukwu Esom, Rico Gustav, Allan Maleche, and Mike Podmore
In 1994, when Health and Human Rights was launched by editor Jonathan Mann, it appeared-in print-in a very different world: one in which the internet had just been created, and could only be accessed through dial-up telephone lines paid for by the minute; cell phones were heavy, clunky, and unaffordable for most. Our thinking about health and human rights, formed before the digital age, must now advance to keep pace with its new risks and opportunities. Continue reading
The Uncounted: Video interview
In 2017 I was honored to be one of three recipients of the International Geneva Award from the Swiss Network for International Studies (SNIS). Here’s a 4-minute video interview about that work, now transmogrifying into part of my forthcoming book, The Uncounted: Politics of Data in Global Health. Many thanks to Ruxandra Stoicescu and the SNIS team.
Can we democratize data?
Last week, the Bernstein Institute at New York University held a powerful meeting of activists and thinkers about data, algorithms and resistance. We met in the classically elegant Vanderbilt Hall, under the watchful gaze of the portraits of past NYU presidents, but the emphasis was squarely on activism: how communities can resist top-down algorithmic control, and reclaim a space for democratic decision-making.
Some speakers had reports that were starkly Orwellian. Big Brother is here already, but in many countries, he’s specifically just watching people of color, trans and queer people, migrants and poor people – through predictive policing and other algorithmic forms of control and domination. For some affected communities, democratizing data is already a matter of survival.
Democratizing Data conference
I’m really looking forward to this one: Democratizing Data: Grassroots strategies to advance human rights will meet at New York University School of Law on April 17-18, 2019. Registration is free and open to the public.
It’s a promising motley convening of activists, scholars, scientists and lawyers. I’ll be joining the 3pm panel on April 17, “Can we democratize data?” As the organizers write, “Despite datafication’s dark side, a movement is brewing at the grassroots. When data is demystified, deconstructed, and placed in the hands of affected communities it can be used to empower and fight injustice. Exerting control over processes of definition, computation, and machine learning, communities are turning the data gaze on those in power.”
I’m reliably told that facial recognition software will not used at the event 😉 Join us!
Data, priorities and global health
I spent part of January working on my book manuscript, The Uncounted: Politics of Data in Global Health. When I began writing this in 2017, I was just interested in the data paradox: in which criminalized, stigmatized key populations, who lack data to prove they exist, get no funding for programs that save their lives, reinforcing the lack of data. But as I get deeper into the work, I’m noticing the growing dominance of cost-effectiveness language and tools, and how economic values are shaping how we think about priorities in global health finance.
“Everyone Said No”: Key Populations and Biometrics in Kenya
From the Harvard Health and Human Rights journal:
By Sara L.M. Davis and Allan Maleche
Hands off our fingerprints! That was the message from Kenyan civil society activists who blocked the use of biometric data, such as fingerprints or iris scans, in a government HIV study.
This case study of rights advocacy is the subject of a report, Everyone Said No: Biometrics, HIV and Human Rights, a Kenya Case Study, published by KELIN and the Kenya Key Populations Consortium.“Key populations” in HIV are defined by WHO as sex workers, men who have sex with men, transgender people, people who inject drugs, and people in prison or other closed settings. The case study was written by the authors of this blog and researchers at KELIN and the Key Populations Consortium. It provides an overview of the HIV epidemic and data gaps on key populations in Kenya, an analysis of the legal and human rights issues in use of biometrics in HIV research, and documentation of the advocacy by key populations groups in Kenya. It also makes recommendations to global health donors, Kenyan authorities, and civil society groups who face similar debates in other countries.
The purpose of the government HIV study was to fill critical gaps in data on key populations in Kenya, to enable better targeting of resources. The government research team aimed to use biometric data to manage the risk of double-counting, given that key populations tend to be highly mobile. As soon as Kenyan key population groups learned about the plan to use biometrics, they became vocal in their opposition, citing concerns about criminalization. In Kenya, sex work, drug use, and same-sex sexual behavior are all criminalized. Through persistent advocacy, they successfully blocked any use of biometrics in the study. It will proceed using other methods.
We will launch the report with a Twitter chat at 15:30 CET (16:30 EAT) Thursday 5 July – join the conversation with @KELINKenya.
Key populations: Lost in the data desert
I’m writing a book on the politics of data for key populations, and it’s led me to think about “data deserts” – areas where no data is produced, so no programs or social services are provided.
It’s a particular problem for key populations (sex workers, men who have sex with men [MSM], people who inject drugs, trans* people and prisoners) in low-income countries. But surprisingly, it’s a problem for countries with higher income too.
Out of the 58 countries that the World Bank classifies as upper-middle income:
- 17 countries had NO official HIV prevalence data for ANY key population group
- 8 countries have HIV prevalence data for only ONE key population, but not the others