BALANCING ACT: THE RIGHT TO PRIVACY VS. DISCLOSURE OF DREADFUL DISEASES IN INDIA

Author:- Riya, Second year student at Jindal Global Law School, Sonipat Delhi NCR. 

ABSTRACT

In the complex and evolving landscape of privacy rights, the clash between an individual’s right to privacy and the societal imperative for disclosure of dreadful diseases has become a focal point of legal debates in India. The right to privacy is a fundamental right protected by the Indian Constitution, while public health concerns often necessitate the disclosure of certain medical conditions. This article aims to critically examine this delicate balance through the lens of Indian legal cases, shedding light on the challenges courts face in reconciling conflicting interests. Laws are dynamic because they are enacted to regulate societal behavior and practices, and they reflect the attitudes of society at a given time. The Pre-Natal Diagnostic Techniques Act, which aims to prevent female feticide, the Persons with Disabilities Act, which empowers and promotes equality and participation of people with disabilities, and the Medical Council of India’s Code of Ethics Regulations, which establish professional standards for medical practice, are a few recent examples. Generally speaking, the general laws pertaining to healthcare are insufficiently strong since they do not sufficiently incorporate measures for confidentiality and privacy. There isn’t a unified law in India that expressly safeguards health information privacy. In general, the current legal system is intricate and deficient. Two essential components of the doctor-patient relationship are confidentiality and privacy. All pertinent information, the majority of which is extremely sensitive in nature (physical functions, sexual activities, medical history, etc.), must be disclosed by patients in a way that makes them feel comfortable.

Doctors can then provide the appropriate diagnosis and treatment with this information.

In order to make the best medical decisions possible, patients are encouraged by medical privacy to seek out information and assistance in order to completely comprehend and weigh all of their alternatives. By protecting those seeking morally dubious medical care from outside criticism and decision-making intervention, it fosters individual autonomy.

INTRODUCTION

The Right to Privacy is a fundamental human right that serves as the cornerstone of personal freedom and autonomy. However, in the context of disclosing dreadful diseases, a complex ethical dilemma arises, forcing society to grapple with conflicting principles. In India, where cultural, social, and legal landscapes are diverse, striking a balance between individual privacy and the need for disclosure in the face of life-threatening illnesses poses unique challenges. This article explores the nuances of this debate, employing Indian case examples to shed light on the complexities involved.

The right to privacy, though not explicitly mentioned in the Indian Constitution, has been recognized as a fundamental right by the Supreme Court through various landmark judgments. The 2017 judgment in the Puttaswamy case solidified privacy as an intrinsic aspect of personal liberty, dignity, and autonomy. Against this backdrop, the tension between privacy rights and disease disclosure must be analyzed by courts.

In the realm of healthcare, individual autonomy is a paramount principle. Patients have the right to control their personal health information and make decisions about their treatment without undue interference. Medical confidentiality, an integral part of healthcare ethics, further reinforces the notion that individuals should be able to trust healthcare providers with sensitive information without fear of unwarranted disclosure.

CONCERNS AND CONTROVERSIES:

The intersection of the right to privacy and the disclosure of dreadful diseases in India has been marred by various concerns and controversies. Several cases have highlighted the ethical, legal, and societal challenges when balancing individual privacy with the imperative of disclosing medical information for public health reasons.

• Stigmatization and Discrimination: Disclosure of dreadful diseases without adequate safeguards raises concerns about stigmatization and discrimination. In the context of HIV/AIDS, despite legal protections, instances of discrimination and stigmatization persist. A case in point is the 2008 incident where a school in Tamil Nadu expelled a girl after discovering her HIV-positive status, reflecting the societal challenges that still prevail despite legal safeguards. Legal cases involving the unauthorized disclosure of medical conditions have highlighted the need for protective measures to prevent societal prejudices against affected individuals.

• Informed Consent and HIV/AIDS Cases: In cases involving the disclosure of HIV/AIDS status, concerns about informed consent and the right to privacy have been at the forefront. The case of Mr. X v. Hospital Z (2002) highlighted the ethical dilemma of disclosing sensitive medical information without the individual’s explicit consent. The controversy revolved around the potential stigmatization and discrimination faced by individuals diagnosed with HIV/AIDS if their status was disclosed without their permission.

• Technology and Contact Tracing Controversies during COVID-19: The advent of technology in the context of contact tracing during the COVID-19 pandemic has sparked controversies surrounding surveillance and the right to privacy. Instances where personal data was collected through mobile applications for contact tracing purposes, led to concerns about the potential misuse of this information. The Arogya Setu app controversy in India underscored the need for transparency, data protection, and adherence to privacy principles in deploying such technologies.

• Government Surveillance and Right to Privacy: The right to privacy faces challenges from government surveillance practices, especially in the context of disease control. The lack of a comprehensive data protection law in India has amplified concerns about the potential abuse of surveillance powers. Legal challenges, such as the petitions against the use of facial recognition technology and mass surveillance during the pandemic, highlight the need for robust legal safeguards to protect individual privacy.

•  Proportionality and Limitations on Privacy Rights: Controversies arise when the limitations imposed on the right to privacy are not proportionate to the public health objectives. The Supreme Court in the Justice K.S. Puttaswamy (Retd.) vs. Union of India (2017) judgment emphasized that any infringement on the right to privacy must meet the proportionality test. Instances where the government’s measures were perceived as overly intrusive or lacking a clear nexus to public health goals have sparked debates on the adequacy of safeguards.

STRIKING THE BALANCE: (LEGAL FRAMEWORK AND ETHICAL CONSIDERATIONS)

The intersection of the right to privacy and the imperative to disclose dreadful diseases poses a significant challenge in the legal landscape. Striking the right balance between individual privacy and public health considerations requires a nuanced approach.

• [LEGAL FRAMEWORK]:
  • Constitutional Foundations: The Indian Constitution, through Article 21, recognizes the right to privacy as a fundamental right. However, it also allows for reasonable restrictions on this right in the interest of public health. The legal framework must be well-defined, ensuring that any encroachment upon privacy is proportionate and justifiable.

• Data Protection Legislation: (Please Check Data Protection Act 2023)

• Healthcare Regulations: Specific regulations within the healthcare sector, such as the Medical Council of India’s Code of Ethics, can provide additional protection for patient confidentiality. These regulations must be aligned with broader legal principles to create a cohesive framework.

• [ETHICAL CONSIDERATIONS]:
  • Informed Consent: Respecting the principle of informed consent is paramount. Individuals have the right to decide whether and to what extent their medical information should be disclosed. Ethical healthcare practices demand transparent communication with patients, explaining the potential consequences of disclosure and ensuring their voluntary agreement.

• Anonymization and De-identification: Ethical considerations should drive the adoption of anonymization and de-identification techniques in disease disclosure. Stripping personal identifiers from medical data helps protect individual privacy while still allowing for the collation of valuable public health information.

• Non-Stigmatization: Ethical guidelines should emphasize the need to prevent stigmatization and discrimination against individuals with dreadful diseases. Responsible disclosure practices should be designed to minimize societal prejudices and foster empathy and support.

• [STRIKING A SYNERGISTIC BALANCE]:
  • Proportionality Test: The legal framework and ethical considerations must work in tandem to pass the proportionality test. Any limitation on the right to privacy should be proportionate to the public health objectives sought to be achieved. Striking this balance requires meticulous analysis, ensuring that measures are necessary and not overly intrusive.

• Continuous Review and Adaptation: Given the evolving nature of healthcare challenges, the legal and ethical framework must be constantly reviewed and adapted. Regular updates ensure that the balance struck remains relevant, effective, and respectful of individual rights.

CONCLUSION

The right to privacy and the disclosure of dreadful diseases presents a challenging intersection in the Indian legal landscape. While the right to privacy is paramount, the state’s duty to protect public health necessitates careful calibration. Striking the right balance requires a harmonious interplay of legal safeguards, ethical considerations, and a commitment to respecting individual autonomy. As India continues to evolve its legal framework and grapple with emerging health crises, a nuanced approach is imperative to uphold fundamental rights without compromising public health imperatives. Lack of safeguards, implementation, redressal processes, and judicial passivity are among the problems that keep coming up. However, public litigation pertaining to health has increased dramatically over the past 20 years. The legal cases of Mr. “X” v. Hospital “Z” and Ms. X vs. Mr. Z & Anr. are two noteworthy instances that emphasize the right to medical privacy. Concerns about privacy, disclosure, confidentiality, and ethical use of information have been raised by the Mother and Child Tracking System in India, an e-governance initiative that gathers data on all pregnant women and infants to guarantee the delivery of maternal and child health services from conception to 42 days after delivery for pregnant women and up to five years for children, as well as the UID objective of health and health-related development schemes as a “killer application”. In the 2009lxxxvi case of Secretary General, Supreme Court of India v. Subhash Chandra Agarwal, the Delhi High Court ruled that Section 8(1)(j) of the RTI Act prohibits the disclosure of “personal information including tax returns, medical records, etc.” The Court argued, however, that the bar preventing disclosure would be lifted if it could be demonstrated that there was a sufficient public interest in its disclosure. The authority would then be able to disclose the information after properly notifying the third party—that is, the person whose records are being sought or for whom the information is relevant—and taking his opinions into consideration.