Centre for Internet and Society

Reclaiming the right to privacy: Researching the intersection of privacy and gender

Ambika Tandon and Aayush Rathi — 2021-01-25T10:42:51Z

It was our privilege to be supported by Privacy International, UK, during 2019-2020, to undertake a research project focusing on reproductive health and data surveillance, and to engage on related topics with national civil society groups. Our partner organisations who led some of the research as part of this project are grassroots actors - Domestic Workers Rights Union, Migrant Workers Solidarity Network, Parichiti, Samabhabona, Rainbow Manipur, and Right to Food Campaign. Here we are compiling the various works supported by this project co-led by Ambika Tandon, Aayush Rathi, and Sumandro Chattapadhyay at the Centre for Internet and Society, India.

Previous research conducted by CIS on the subject of sexual and reproductive health (SRH) services in India observes that there is a complex web of surveillance, or ‘dataveillance’, around each patient as they avail of SRH services from the state. [1] In this project on ‘researching the intersection of privacy and gender’, we aimed to map the ecosystem of surveillance around SRH services as their provision becomes increasingly ‘data-driven’, and explore its implications for patients and beneficiaries.

Through this project, we were interested in documenting the roles played by both the public and the private sector actors in this ecosystem of health surveillance. We understand the role of private sector actors as central to state provision of sexual and reproductive health services, especially through the institutionalisation of data-driven health insurance models, as well as through extensive privatisation of public health services.

We supported studies on a range of topics that constitute the experience of sexual and gender minorities and women when accessing public health and welfare systems, including the treatment of trans persons by law and welfare systems in India, access to abortion and maternity benefits for low income women, access to ART treatments by PLHIV, and so on.

We found that many respondents had no information about welfare schemes despite being eligible, while many others were excluded from them because they did not have Aadhaar cards and other ID documents, or because of errors and inconsistencies in the same. Direct benefit transfer schemes also required mobile phone linkage and active Aadhaar-seeded bank accounts, which added another layer of requirements and excluded vulnerable populations. We also found that respondents had very little information about the storage and sharing of their data, which raises questions about the possibility of implementing complex consent architectures for digitised health data as imagined by the Indian government through policies such as the Non Personal Data Governance Framework. We found that populations that carry stigma are most likely to be excluded from health and welfare access as a result of data collection, including trans groups, PLHIV, and single women or adolescent girls seeking abortion.

Please find below the various works undertaken as part of this project. We hope these works will be useful for civil society organisations, grassroots organisations, and reproductive rights organisations.

Article

Raina Roy. (July 18, 2020). Coronavirus: Kolkata’s trans community has been locked out of healthcare and livelihood. Scroll.in. https://scroll.in/article/968182/coronavirus-kolkatas-trans-community-has-been-locked-out-of-healthcare-and-livelihood

Rosamma Thomas. (November 02, 2020). Citizen data and freedom: The fears of people living with HIV in India. GenderIT. https://www.genderit.org/articles/citizen-data-and-freedom-fears-people-living-hiv-india

Sameet Panda. (November 25, 2020). One ration card, many left behind. Indian Express. https://indianexpress.com/article/opinion/one-ration-card-many-left-behind/

Sameet Panda (January 11, 2020). One Nation One Ration Card in Odisha - Only Pain, No Gain. Sanchar, page 6. https://sancharodisha.com/

Santa Khurai. (June 18, 2020). 'I feel the pain of having nowhere to go': A Manipuri trans woman recounts her ongoing lockdown ordeal. Firstpost. https://www.firstpost.com/india/i-feel-the-pain-of-having-nowhere-to-go-a-manipuri-trans-woman-recounts-her-ongoing-lockdown-ordeal-8494321.html

Shreya Ila Anasuya. (December 21, 2020). How India’s Healthcare System Lets Down Trans Men. Go Mag. http://gomag.com/article/heres-what-its-like-to-be-a-trans-man-in-india/

Policy Response

Aayush Rathi, Aman Nair, Ambika Tandon, Pallavi Bedi, Sapni Krishna, and Shweta Mohandas. (September 13, 2020). Inputs to the Report on the Non-Personal Data Governance Framework. The Centre for Internet and Society. https://cis-india.org/raw/inputs-to-report-on-non-personal-data-governance-framework/

Report

Anchita Ghatak. (December 30, 2020). Domestic Workers’ Access to Secure Livelihoods in West Bengal. Parichiti. https://cis-india.org/raw/parichiti-domestic-workers-access-to-secure-livelihoods-west-bengal

Endnotes

[1] Aayush Rathi, Is India's Digital Health System Foolproof? (2019)
Aayush Rathi and Ambika Tandon, Data Infrastructures and Inequities: Why Does Reproductive Health Surveillance in India Need Our Urgent Attention? (2019)
Ambika Tandon, Feminist Methodology in Technology Research: A Literature Review (2018)
Ambika Tandon, Big Data and Reproductive Health in India: A Case Study of the Mother and Child Tracking System (2019)

For more details visit http://editors.cis-india.org/raw/reclaiming-the-right-to-privacy-researching-the-intersection-of-privacy-and-gender

Gender, Health, & Surveillance in India - A Panel Discussion

Aayush Rathi and Ambika Tandon — 2020-12-23T14:03:13Z

Women and LGBTHIAQ-identifying persons face intensive and varied forms of surveillance as they access reproductive health systems. Increasingly, these systems are also undergoing rapid digitisation. The panel was set-up to discuss the discursive, experiential and policy implications of these data-intensive developments on access to public health and welfare systems by women and LGBTHIAQ-identifying persons in India. The panelists presented studies undertaken as part of two projects at CIS, one of which is supported by Privacy International, UK, and the other by Big Data for Development network established by International Development Research Centre, Canada.

Event note and agenda: Read (PDF)

Recording of the discussion: Watch (YouTube)

For more details visit http://editors.cis-india.org/raw/gender-health-surveillance-in-india-panel-discussion

Big Data and Reproductive Health in India: A Case Study of the Mother and Child Tracking System

ambika — 2019-12-06T04:57:55Z

In this case study undertaken as part of the Big Data for Development (BD4D) network, Ambika Tandon evaluates the Mother and Child Tracking System (MCTS) as data-driven initiative in reproductive health at the national level in India. The study also assesses the potential of MCTS to contribute towards the big data landscape on reproductive health in the country, as the Indian state’s imagination of health informatics moves towards big data.

Case study: Download (PDF)

Introduction

The reproductive health information ecosystem in India comprises of a range of different databases across state and national levels. These collect data through a combination of manual and digital tools. Two national-level databases have been launched by the Ministry of Health and Family Welfare - the Health Management Information System (HMIS) in 2008, and the MCTS in 2009. 4 The MCTS focuses on collecting data on maternal and child health. It was instituted due to reported gaps in the HMIS, which records monthly data across health programmes including reproductive health. There are several other state-level initiatives on reproductive health data that have either been subsumed into, or run in parallel with, the MCTS.

With this case study, we aim to evaluate the MCTS as data-driven initiative in reproductive health at the national level. It will also assess its potential to contribute towards the big data landscape on reproductive health in the country, as the Indian state’s imagination of health informatics moves towards big data. The methodology for the case study involved a desk-based review of existing literature on the use of health information systems globally, as well as analysis of government reports, journal articles, media coverage, policy documents, and other material on the MCTS.

The first section of this report details the theoretical framing of the case study, drawing on the feminist critique of reproductive data systems. The second section maps the current landscape of reproductive health data produced by the state in India, with a focus on data flows, and barriers to data collection and analysis at the local and national level. The case of abortion data is used to further the argument of flawed data collection systems at the national level. Section three briefly discusses the state’s imagination of reproductive health policy and the role of data systems through a discussion on the National Health Policy, 2017 and the National Health Stack, 2018. Finally, we make some policy recommendations and identify directions for future research, taking into account the ongoing shift towards big data globally to democratise reproductive healthcare.

For more details visit http://editors.cis-india.org/raw/big-data-reproductive-health-india-mcts