Access to people’s health data holds the power to influence the governance of their bodies and lives, explains Radhika Radhakrishan in this essay that was first published by the Heinrich Böll Stiftung in Delhi on 2 November 2021. Read it below, or on the HBS website if you’d like to see the accompanying images as well! More
Over the past few years, there has been a drive towards the digitisation of healthcare in India. Policy frameworks in the country are incentivising further datafication by considering health data to be a commodity. In the context of big data, I argue that when health data is viewed as a disembodied resource, access to people’s health data becomes a form of power, giving those with such access the unparalleled and unprecedented power to influence the governance of people’s bodies and lives. Recognising the interconnections between our bodies and data from within an alternative feminist framework, this paper analyses the datafication of health in India through emerging developments proposed under the National Digital Health Mission (NDHM) ecosystem, and its implications for the bodies and rights of people. This work seeks to understand how datafication contributes to the disembodiment of health data in policy frameworks; the consequences of disembodiment for how people’s health data is understood to have value and who can benefit from that value, with a focus on health insurance companies; and how acknowledging the relationship between health data and bodies within policy frameworks can empower people to safeguard their right to equitable healthcare. More
Data protection policy frameworks in India, such as the National Digital Health Mission ecosystem, are incentivising the datafication of health by considering health data to be a commodity. However, in the age of big data, when health data is viewed as a disembodied resource, access to people’s health data becomes a form of power, giving those with such access the unparalleled and unprecedented power to influence the governance of people’s bodies and lives. This policy brief recognises the interconnections between our bodies and data from within a feminist framework, and through this alternative framework, proposes recommendations to safeguard patient rights from threats arising from the datafication of health. This policy brief was first published by the Data Governance Network. More
Pandemic-era data-enabled surveillance — via digital tracking, disinformation, a variety of apps, phones and drones — undermines data privacy, autonomy and dignity of individuals and specifically disadvantages women, research shows.This piece was first published in Article 14. More
Surveillance is increasing control over bodies of individuals, and the framework of data as a resource is facilitating this control, as illustrated here through the case of COVID-19 in India. Data governance frameworks view data as a disembodied resource, erasing its connections with people’s bodies and making surveillance seem innocuous. A feminist bodies-as-data approach enables embodied harms of surveillance to be pinpointed, and recommendations to be made to alleviate them. Drawing upon research of lived experiences of marginalised communities whose voices are often left out in data protection discourse, this policy brief proposes recommendations preserving not just data privacy, but bodily integrity, autonomy, and dignity of individuals. This policy brief was first published by the Data Governance Network. More
एक कश्मीरी मुसलमान सलीम (बदला हुआ नाम) मार्च 2020 की सुबह अपने फ़िक्रमंद रिश्तेदारों की फोन कॉल से जागे, जो बता रहे थे कि उसका नाम और फोन नंबर एक सार्वजनिक सरकारी सूची में छपा है. इस सूची में क़रीब 650 लोगों का ब्योरा था, जो संदिग्ध रूप से उस … More
This paper presents a study of COVID-19 in India to illustrate how surveillance is increasing control over bodies of individuals, and how the dominant framework of data as a resource is facilitating this control. Disembodied constructions of data erase connections between data and people’s bodies and make surveillance seem innocuous. As a departure from such a framework, this study adopts a feminist bodies-as-data approach to pinpoint the specific, embodied harms of surveillance. Starting from lived experiences of marginalised communities whose voices are often left out in debates on data protection, it shows that surveillance undermines not just data privacy, but more importantly, the bodily integrity, autonomy, and dignity of individuals. This paper was first published by the Data Governance Network. More
Guidelines on public mobility may be needed to control community transmission. However, when this is carried out in a manner that evokes fear without taking into account the socio-economic contexts and needs of people, then it is not the disease being controlled, but rather the bodies of people through threats of collecting their data. This article was originally published for Observer Research Foundation (ORF) CyFy Edit here. More
Have you (or someone you know) been asked to mandatorily download the Aarogya Setu app by your employer, school / university, resident welfare association, or for accessing services such as healthcare? Are you having any difficulties in accessing various tech-based solutions implemented by the government for receiving financial aid? Are drones being used in your locality to enforce the lockdown? Are you or others in your communities facing any kind of stigma or discrimination due to these measures? Are you facing parental or spousal control over access to mobile phones and the Internet during the lockdown? If so, we’re eager to hear from you! More