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

Posted by Ambika Tandon and Aayush Rathi |
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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)