Introduction

The Right to Genome Privacy Accountability Doctrine is an emerging legal framework requiring governments, healthcare providers, laboratories, research institutions, and biotechnology companies to be responsible for how they collect, analyse, store, disclose, and use genomic information.

A person’s genome can reveal inherited diseases, biological relationships, ancestry, and other highly personal characteristics. Because this information may also expose facts about relatives, a single person’s consent may not resolve every privacy concern. The doctrine therefore connects genetic privacy with dignity, informed consent, data security, transparency, and remedies for misuse.

In India, this doctrine is not expressly codified as a separate fundamental right. Its constitutional foundation lies in Article 21’s protection of privacy and personal liberty, supported by judicial decisions restricting unjustified DNA testing. It is best understood as an application of established privacy principles to genomic technology—not as a standalone enacted law.

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Core Principles of Accountability

The doctrine may impose the following responsibilities:

Lawful purpose and informed consent: Genomic data should be collected for a specific, legitimate purpose. Consent should explain the nature of testing, possible findings, and intended use.

Data security: Institutions should protect genomic information against unauthorised access, loss, or disclosure.

Purpose limitation: Data collected for treatment or research should not automatically be reused for commercial profiling, insurance assessment, or unrelated investigations.

Retention and deletion: Genomic data should be retained only as long as justified by the purpose or a legal obligation.

Transparency and audit: Organisations should maintain records of sample collection, testing, access, transfer, and disposal.

Remedies: Affected individuals should have access to complaint mechanisms, investigation, and appropriate legal relief.

Accountability requires institutions to demonstrate that they have taken reasonable steps to protect genomic information. A privacy breach may trigger different legal consequences depending on the circumstances, applicable legislation, and whether negligence, unlawful processing, or constitutional infringement is established.

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 an important aspect of the right and recognised that privacy concerns may arise from both State and non-State actors.

The judgment supports the accountability principle that genomic information must be protected through a robust data-protection framework. State interference 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 is an extremely sensitive matter and should not be ordered routinely. A court must consider whether testing is genuinely necessary and balance evidentiary value against privacy and dignity.

This decision supports accountability by requiring a justification before a person is compelled to provide genetic material.

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

The Supreme Court emphasised that DNA testing in matrimonial disputes should not be ordered casually. The decision highlights the need to consider the privacy and dignity of the child and other affected persons before authorising genetic testing.

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

The Supreme Court reiterated that compelled DNA testing constitutes a serious intrusion into privacy and personal liberty. It must satisfy legality, legitimate aim, and proportionality. The Court stressed that genetic testing should not be ordered where the dispute can be resolved through other evidence.

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Conclusion

The Right to Genome Privacy Accountability Doctrine requires institutions to handle genomic information lawfully, transparently, securely, and responsibly. Indian constitutional law provides a strong foundation through Puttaswamy and judicial restrictions on unnecessary DNA testing. Although the doctrine is not independently codified, its principles support informed consent, purpose limitation, proportionality, oversight, and remedies against misuse. Its ultimate objective is to permit legitimate scientific and medical progress while protecting genetic privacy and human dignity.