‘Private and Controversial’ delves into what afflicts public health in India

Rakesh Kochhar

CHARLES-Edward Amory Winslow says public health is “the science and art of preventing disease, prolonging life and promoting health through the organised efforts and informed choices of society, organisations, communities and individuals”. Health encompasses not only physical but also psychological or mental and social wellbeing.

The Covid-19 pandemic has made us all aware of not only terms like spike protein and viral genome, but also herd immunity, R factor, different vaccines and booster shots. The pandemic also brought into focus surveillance, contact tracing, containment of cases and cordoning off of ‘infected’ houses. Using real-time data dashboards and applications like Aarogya Setu, spread of the pandemic was tracked. The long arm of administration extended much beyond the measures adopted to isolate patients in the early years of HIV-AIDS epidemic. Both these examples highlight the issue of personal freedom of an individual.

An individual’s right to privacy was upheld in a landmark judgment by the Supreme Court in the Puttaswamy vs Union of India in 2017. The court stated that Right to Privacy is an inherent and integral part of the Constitution. The conflict mainly arises between an individual’s right to privacy and the legitimate aim of the government to implement its policies. If the government takes steps as part of public health measures, which infringe upon an individual’s right to freedom and dignified life, there is bound to be a controversy.

‘Private and Controversial: When Public Health and Privacy Meet in India’ is a collection of essays edited by Smriti Parsheera, who has impeccable credentials as a public policy researcher with interest in interaction of digital technologies with law and society. Contributors include experts in public health, law, economics, information technology and computer science and technology policy. The Foreword and the chapter on Legal Framework on Public Health and Privacy have been written by Justice BN Srikrishna, a former Supreme Court judge, who led the Committee of Experts on Data Protection that was involved in formulating the data protection framework for India.

As the world and India take rapid strides in digitisation of data, its benefits in planning public health schemes are being acknowledged and given due importance in health governance. Under the government’s National Digital Health Mission, now rechristened as Ayushman Bharat Digital Mission (ABDM), master registries of health-related data of all citizens will be digitised as ‘National Health Stack’, which will be accessible to both the Centre and the states across public and private sectors. ‘Private and Controversial’ has brought to fore the points raised by social scientists and legal experts about how adequate safeguards about privacy of individuals are lacking in ABDM.

At present, India does not have an operational legal framework on data protection. The Personal Data Protection Bill 2019 was drafted to fulfil the need for a law on protection of personal data, which included health data and genetic and biometric information. A number of shortcomings were pointed out in the Bill and this is a recurrent theme in different essays. This Bill was, however, withdrawn following recommendations of a JPC and draft of a new Digital Personal Data Protection Bill has been put out.

While the book has many experts from legal, policy and sociology fields, there are only two from public health. A few issues related to public health research have not been highlighted. One of them is the risks involved in accessibility of data across borders, especially related to genetic material. Identification of susceptibility to certain diseases in geographical or ethnic groups can be a matter of concern. ICMR, the nodal body for medical research, has laid down guidelines for sharing of all kinds of biological material abroad for research/diagnostic purposes.

All the essays are well-researched and beautifully written with extensive bibliography. This compilation will serve as a source material for students of law, public health policy and digital technology. Smitha Krishna Prasad’s chapter on health-tracking technologies and Astha Kapoor’s essay on data stewardship are outstanding. Essays on privacy considerations of community health workers and trust are very insightful. The chapter on artificial intelligence (AI) is a primer for readers interested in the topic. The scope of AI in medicine is expanding exponentially and would need to be a part of future deliberations on personal privacy, but may not fall under the purview of public health. The same holds true for the chapter on ‘Regulating the Womb’ and another one on mental health.

This remarkable compendium pinpoints the correct diagnosis of what afflicts the current legal framework on privacy concerns in public health in India. It, however, holds back on outlining remedial measures which could generate debate and controversy.