Introduction

The Right to Genome Privacy Doctrine Governance refers to the legal and institutional framework for protecting an individual’s genomic information from unjustified collection, analysis, storage, disclosure, and exploitation. It combines the principles of genetic privacy, human dignity, informed consent, data security, and institutional accountability.

Genome data is exceptionally sensitive because it may reveal inherited diseases, biological relationships, ancestry, and other intimate characteristics. Its disclosure can also affect relatives who did not provide consent. Therefore, governance must protect individuals while allowing legitimate medical treatment and scientific research.

In India, genome privacy is not expressly recognised as a separate fundamental right. Its constitutional basis is primarily Article 21, which protects privacy and personal liberty. The Supreme Court’s privacy jurisprudence establishes that privacy has both a negative dimension—protection against intrusion—and a positive dimension, requiring the State to take measures to safeguard personal information.

Indian Kanoon

Governance Principles

A responsible genome privacy governance framework should include:

Informed consent: Individuals should understand the purpose of genomic testing, potential findings, and intended use of their data.

Purpose limitation: Genomic data collected for diagnosis or research should not automatically be used for unrelated commercial or investigative purposes.

Data security: Laboratories and institutions should apply safeguards against unauthorised access, disclosure, or loss.

Retention controls: Genetic samples and profiles should not be retained indefinitely without a lawful and justified purpose.

Non-discrimination: Genetic information should not be used arbitrarily to deny employment, insurance, healthcare, or other opportunities.

Oversight and remedies: Independent review, grievance mechanisms, and appropriate legal remedies should be available when genomic information is mishandled.

Governance must also distinguish between a DNA profile used for identification and genomic information capable of revealing health or hereditary traits. Broader genomic analysis creates greater privacy risks and requires stronger safeguards.

PRS Legislative Research

Relevant Case Laws

1. K.S. Puttaswamy v. Union of India (2017) 10 SCC 1

The Supreme Court recognised privacy as a fundamental right under Article 21. It identified informational privacy as a protected interest and stated that privacy imposes positive obligations on the State to protect individuals. This provides the constitutional foundation for genome privacy governance. Any State intrusion must satisfy legality, legitimate purpose, and proportionality.

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2. Bhabani Prasad Jena v. Orissa State Commission for Women (2010) 8 SCC 633

The Court held that DNA testing in paternity disputes should not be ordered routinely. Courts must balance the need for scientific evidence against privacy and dignity and determine whether testing is genuinely necessary. This supports governance requiring justification before compelled genetic testing.

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3. Aparna Ajinkya Firodia v. Ajinkya Arun Firodia (2023) 5 SCC 1

The Supreme Court held that DNA testing of a child should not be ordered frivolously. It recognised that children have a right not to have their legitimacy questioned without sufficient legal justification. The decision highlights the need to protect children’s privacy and dignity in genetic investigations.

VoxJuris

4. R. Rajendran v. Kamar Nisha (2025)

The Supreme Court reiterated that compelled DNA testing is a serious intrusion into privacy and personal liberty. Such testing must satisfy legality, legitimate aim, and proportionality. The judgment reinforces the need for judicial oversight before genetic material is obtained without consent.

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Conclusion

The Right to Genome Privacy Doctrine Governance seeks to ensure that genomic information is handled lawfully, securely, transparently, and proportionately. Indian constitutional law provides a strong foundation through Article 21 and judicial decisions limiting unnecessary DNA testing. Although genome privacy is not separately codified as a fundamental right, governance should protect consent, confidentiality, data security, and remedies while permitting legitimate medical and scientific uses. Its ultimate objective is to preserve human dignity and genetic privacy alongside responsible scientific progress.