In a small semi-rural civic dispensary on the outskirts of Chandigarh—the capital of the northern Indian states of Punjab and Haryana—I sit across the table from a medical intern in charge of overseeing patient enrollments for the recently launched National Digital Health Mission (NDHM). This union territory is among the seven where the NDHM has been piloted by the Government of India since its launch on 15 August 2020 by Prime Minister Narendra Modi. The NDHM aims to create a national digital health ecosystem, which will provide citizens of India with a unique Health ID to share personal health data among various stakeholders.
According to theNDHM’s health data policy, participation in the digital ecosystem is voluntary, but the medical intern across the table has a different side of the story to share:
The Health ID has also been integrated into the government’sCoWIN(CovidVaccine Intelligence Network) vaccinator portal and there are manyreported instancesof Health IDs being registered for people without their consent through this portal at the time of vaccination.
The health workers in Chandigarh showed me a WhatsApp message they received from the health department mentioning that “The registration for generating Health IDs is mandatory for all the citizens of our country.”
Beyond this, health workers have received no information about the NDHM. An auxiliary nurse midwife (ANM)—female health worker based at a primary health centre—complains:“They should tell clearly what this work is for... We don't know absolutely anything.”Consequently, the general public is also unaware of what they are being made to sign up for.
A key principle of the NDHM is that true ownership and control of the personal data will remain with individuals to whom the health data relates. But people cannot meaningfully exercise control over their data if they don’t have any understanding of their participation in the digital health ecosystem.
On a conceptually more fundamental level, ownership is acounterproductiveframework for data protection because it is embedded in extractive market logics and ignores concerns of how data shapes societies. Despite this, data ownership is a popular framework because policies view data as a disembodied resource, a capital commodity,propertyto be owned and traded. Data, after all, is hailed to be the “new oil.”
This dominant framework of data as a resource can be traced back to the field of cybernetics, whichconceptualiseddata as a layer permeating everything while existing independently from the medium carrying it. Till date, this understanding of data as a disembodied resource finds its way into various domains, including the policy frameworks governing the digital health ecosystem in India. These policy frameworks fail to capture the relationships between people’s bodies and their data, and the power relations governing these relationships. This is concerning because disembodiment of data opens it up to possibilities of human exploitation.
Feminists have led the way inforegroundingthe relationship between data andbodies by showing that they are intimately interconnected, and calling for a deeper understanding of data as embodied. Feminists argue that data is an extension of our bodies, and control over data is often experienced by people as control over their bodies. For example, victims of non-consensual sharing of intimate images online often describe their experience in terms of physical violence, not in terms of a data protection violation. When viewed through such embodied experiences, we need to rethink dataprotection policies in a way that has little to do with capitalist relations of exchange and more to do with feminist thinking of the body.
A popular feminist slogan in sex education to teach children about physical boundaries is “my body belongs to me.” There is also a long history of feminists using the slogan “my body is mine” in the fight against sexual violence.
