Category Archives: Privacy

Enter the Cyborgs: Health & human rights in the digital age

It was a pleasure to co-edit this special section of the Health and Human Rights Journal with Carmel Williams on “Big Data, Technology, Artificial Intelligence and the Right to Health”. It gathers a diverse group of anthropologists, human rights lawyers, tech researchers, rights activists, and UN policy officials to explore early thinking on this rapidly emerging field.

As Carmel and I wrote in our editorial, COVID-19 has forced many of us into a strange new intimacy with our phones and laptops: those of us in the elite with the privilege to work from home have virtually melded with our machines. Personally, I don’t think I’ve been farther than one room’s length from my smartphone since March 2020. So if we are now basically cyborgs…living “on the boundary between fact and fiction” (Haraway 1995), what use are 20th century human rights?

A bunch of smart people tackled this and other questions, ranging from the rights of children in the digital age, to the role of tech in human rights investigations, to the role of the private sector and UN agencies, to the possibilities for new forms of civil society and community engagement in the digital space. The issue is available for free download here.

A democracy deficit in digital health?

PERCo_CL15_biometric_controllerFrom 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

Can we democratize data?

IMG_6329Last 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.

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Democratizing Data conference

mod4_landscape_2I’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!

 

AIDS 2018: New technologies, new data, new risks

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Sex workers protest to demand their rights at AIDS 2018

The third in a series of four articles on AIDS 2018 for the Health and Human Rights journal. 

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July 24, 2018

Data has been a hot topic throughout the first two days of AIDS 2018—who has it, how to get it, and what kinds of data can speed progress to the end of AIDS. But while new technologies are generating real excitement among donors and researchers, human rights activists are rarely in these discussions, leaving questions of risk and ethics largely in the shadows.

Some new methods that are rapidly on the rise include:

  • Geospatial mapping, which uses individual data to map key population hotspots and patterns of migration
  • Biometrics, the collection of physical markers such as iris scans, fingerprints, or facial scans that can identify individuals, and
  • Phylogenetics, the use of molecular sequencing data, such as DNA, to trace historical relationships among people and chart the transmission of viruses.

These are some examples of data use presented in the first two days: we have heard about the use of biometrics to track sex workers and long distance truckers in African transportation corridors; a Mumbai project that mapped sites around the city of men who have sex with men using Grindr, a gay dating app; use of HIV genotyping and phylogenetics to assess transmission of resistance.

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