By Smriti Parsheera (CyberBRICS Fellow)1
The book Private and Controversial: When Public Health and Privacy Meet in India brings to light the complex interactions between the fields of public health and privacy, placing them in the context of current developments in India. This includes the developments around the management of the Covid-19 pandemic, the ongoing debates on the formulation of a data protection law in the country and the broader trend of digitalization in the Indian health sector, particularly under the Ayushman Bharat Digital Mission (ABDM). While the COVID crisis offers an impetus for this conversation, the book’s scope extends much beyond that, for instance, to cover everyday issues relating to reproductive choices, patient confidentiality and trust, decisional autonomy and the role of community health workers. Drawing from the introductory chapter of the book, this article offers an overview of the main themes covered in the book.
The book’s introduction is followed by 14 chapters divided into four parts. The first part called the ‘Current State of the World’ describes the Indian legal framework on privacy and public health and the actions taken by the state to manage the COVID-19 pandemic. In our chapter on the legal framework, Justice B.N. Srikrishna and I outline the constitutional and statutory framework surrounding issues of public health from a privacy perspective. This includes a discussion on the allocation of responsibilities between the central and the state governments and the leading case law on this subject, including the nine judge bench decision of the Indian Supreme Court in K.S Puttaswamy v. Union of India that recognized privacy to be a fundamental right.
The two other chapters in this part focus on different aspects of the Indian state’s response to the COVID-19 pandemic. In their chapter on COVID-19 data infrastructure in India, Bidisha Chaudhuri and Meera Muthukrishnan dwell upon the politics of how COVID related data sets were created, controlled and used in India. In the process, they question the uncritical reliance on databases as a means of getting to ‘know’ the pandemic. Next, Vrinda Bhandari maps out different types of physical as well as digital COVID surveillance measures adopted by the government as well as private actors like employers and resident associations in India. She points to the largely tech-centric nature of the interventions and the challenges posed by the lack of sufficient focus on the utility, reliability, accuracy and security in most of the cases.
The second part of the book, titled ‘India’s Public Health Machinery’ analyzes various layers of India’s public health apparatus. Set in the context of the ABDM project, the first chapter in this part, by Prashant Agrawal, Subodh Sharma, Ambuj Sagar and Subhashis Banerjee, raises fundamental questions about India’s overarching health digitization architecture. They observe that the project is not sufficiently grounded in the realities of data use cases, feasibility studies and does not account for the technical and administrative failures and complex privacy design considerations relevant for an exercise of this nature. Next, the chapter by Vijayaprasad Gopichandran focuses on the role of community health workers, like the Accredited Social Health Activists (ASHAs) and the Anganwadi workers, in the Indian public health ecosystem. He points to how these workers serve as a critical link between the community and the state, negotiating complex issues of trust, confidentiality and stigma involving community members.
Looking beyond overarching architectures and administrative mechanisms, in the next chapter K.P. Krishnan, Rishab Bailey and Gaurav Jain offer an evaluation of three specific public health programmes – on tuberculosis elimination, safe motherhood and government-financed health insurance. While analyzing these projects against well accepted principles of data protection, the authors find that the more recent initiatives seem to pay relatively better attention to issues of data protection. They posit that this is probably on account of the greater reliance on digital technologies under the latest programmes. This discussion is followed by the chapter by Olinda Timms in which she identifies ‘trust’ to be an essential and powerful component of successful health interventions. Broadening the discussion on trust beyond just the state, she emphasizes the ethical and pragmatic considerations relating to the trustworthiness of health providers, medical institutions, researchers and trust in the system as a whole.
The third part of the book focuses on the theme of ‘Locating the “Public” in Public Health’. It dwells into privacy considerations involving specific population groups, highlighting how an approach that is respectful of the right to privacy also helps further the goals of public health. It starts with the chapter by Anindita Majumdar on the regulation of the womb where she selects three sites of inquiry – surrogacy, hysterectomies and cesarean sections – to demonstrate how issues of bodily integrity and autonomy of women play out in these spaces. Next, Vivek Divan and Shivangi Rai emphasize the importance of a humane and rights-based approach towards the treatment of persons living with HIV/AIDS. They trace the positive developments in the law in terms of respecting the patient’s right to confidentiality while also observing that there remains a gap between the text of the law and actual practice on these issues. Lastly, Arjun Kapoor highlights issues of decisional autonomy and legal capacity faced by persons with mental illness who are often treated as ‘incomplete beings’ by the state and society. He roots his observations in the legal and moral foundations of decisional autonomy and the interpretation of this right in international treaties and by constitutional courts in India.
Finally, the fourth part of the book, which is titled ‘The Governance of Health Data’, explores different facets of the datafication trends in the health sector in India. The essays in this part bring out the challenges as well as opportunities of state and private access to health data. It begins with a critique of the extensive and systematic collection of health data by the Indian state by Faiza Rahman and Ajay Shah. They argue that the increased legibility of citizens by the state comes with a varied set of risks, to the individual, the community and the values of democracy at large. Next, Astha Kapoor dwells upon the concept of health data stewardship in the context of the policy developments around India’s draft data protection bill, the Health Data Management Policy put out by the National Health Authority, and recommendations on the governance of non-personal data. This is followed by the chapter by Smitha Krishna Prasad on the proliferation of health tracking technologies. She outlines the vast landscape of apps, devices and other artifacts that interact with personal health information of individuals and the role of corporations and employers in promoting health-monitoring technologies.
Finally, the chapter by Rahul Matthan and Prakhar Pipraiya focuses on the use of artificial intelligence in the healthcare sector. The authors highlight the current applications and future potential of AI technologies in this space and study how the (now withdrawn) data protection bill of 2019 would interact with the adoption of AI systems. They argue that an accountability-based approach to data management (as opposed to a consent-centric one) would be better suited for exploring the full potential of AI in the health space.
Through these four parts, the book highlights the various tensions as well as complementarities between the fields of privacy and public health. While the discussions in the book are deeply rooted in the Indian social, legal and policy context, they speak to the digitalization trends, data-centric approaches and issues of governance and state capacity that are of broader global relevance.
1 Smriti Parsheera is the editor of Private and Controversial: When Public Health and Privacy Meet in India and a Fellow at the CyberBRICS Project. This piece draws upon the text of the introductory chapter of Private and Controversial published by HarperCollins Publishers India.