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Citizen Data and Freedom: The Fears of People Living with HIV in India

– GenderIT.org

Investigating the impact of data collection on people living with HIV in India

This report explores the privacy concerns of people living with HIV in Bangalore, and their experiences using Aadhaar to access health services.

This study discusses barriers created by inadequate or exclusionary data systems in access to Anti Retro-viral Treatment services for people living with HIV, made critical in the current pandemic.

The essay goes on to highlight excessive data collection, transparency issues, flawed data systems, and the detrimental impact on marginalized communities. The authors conclude that ‘less data is more freedom’, meaning that reducing the prevalence of data collection in health settings could ultimately lead to better public health outcomes.

This faith in technology as a solution is detrimental to democracy, especially in countries with poor digital access and literacy, like India

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