Internet Democracy Project

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

Taking as its starting point key High Court and Supreme Court cases in particular, this report seeks to map the many ways in which jurisprudence at the intersection of gender, sexuality, and digital rights has reduced, and at times expanded, digital rights in India. As our analysis will show, all too often, when it comes to digital rights too, anxieties surrounding women’s sexuality continue to justify court cases and jurisprudence that are geared towards protecting middle class morality and a very narrow vision of ​“Indian culture”, rather than gender and sexuality rights. Whether women are objects or subjects of state control, the negative effect on our digital rights is considerable. This is particularly true where the right to freedom of expression is concerned, but even the lopsided ways in which the right to anonymity and to be forgotten are evolving in Indian jurisprudence is deeply reflective of this dynamic. However, another way is possible. When courts put gender and sexuality rights front and centre, this report will show, possibilities to meaningfully exercise our rights immediately expand.   More

While consent continues to be a crucial element of data protection regimes around the world, it has also been diagnosed with numerous weaknesses as a tool to promote and protect individuals’ autonomy. In this paper, we set out to learn from feminist theory around consent in general and feminist applied thinking around sexual consent in particular how consent regimes in data protection can be strengthened. We argue that such a journey will be promising because of the close entanglements between our bodies and our data. We particularly foreground feminist criticisms of the concept of ​“property in the person” to understand in more detail the profound harms that current data practices do to our personhood, as well as the ways in which consent is currently deployed to enable and even legitimise such practices, rather than challenge or reject them. Through close engagement with feminist thinking around consent, we then develop a list of feminist principles that will need to be followed if consent is to ever be meaningful in data governance. Finally, we outline three areas of change that the application of these principles immediately points to: changes related to the collection of data; changes related to the uses of data; and changes required to protect people who are especially vulnerable in particular. Making these shifts, we argue, is essential if we are to put into place a data infrastructure that is actually empowering for, rather than exploitative of people. This paper was first published by the Data Governance Network.   More

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

Dr. Anja Kovacs, Director of the Internet Democracy Project, was interviewed by The Swaddle, on reimagining the Internet and the political economy of data. In a conversation with Shrishti Malhotra, Producer at The Swaddle, she discussed using the feminist idea of consent to prevent data misuse, how anonymity can empower women online, and why we need to reimagine how data governance works. The Swaddle turned the interview into three short videos and an hour long podcast. Check them all out here.   More

We traced whether Aarogya Setu was mandatory or not during the last 11 months from 8 May 2020 to 1 March 2021. The government claimed it wasn’t, but practice seemed to play out differently. Here is what we found.   More

In earlier research, Kovacs and I (2020) identified six feminist principles to strengthen consent in data governance. An examination of the account aggregator (AA) ecosystem against these principles makes clear that the AA framework is a positive step towards addressing some of the key concerns regarding current consent regimes, for example where auditability and granularity are concerned. However, to fully meet the minimum requirements necessary to ensure meaningful consent, further modifications will be needed. In particular, it appears that the focus of the ecosystem currently is on ensuring that AAs are robust, but that it fails to address challenges relating to other stakeholders in the ecosystem.   More

Consent continues to be a crucial element of data protection regimes around the world. However, as a tool to promote and protect individuals’ autonomy, it has been diagnosed with numerable weaknesses. While there have been suggestions that it is therefore time to move away from consent altogether, we propose a different approach. Data protection regimes first need to reconceptualise the nature of data, by recognising the need to centre bodies in debates on data governance. Once the entanglement between bodies and data has been acknowledged, data governance regimes can, then, adopt feminist principles of consent that build on insights developed in numerous offline contexts and which allow us to imagine data relations that enable people to actually move closer to the ideal of meaningful consent. This policy brief was first published by the Data Governance Network.   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