Introduction

The Right to Genome Privacy Accountability refers to the legal and ethical responsibility of governments, healthcare institutions, research organisations, laboratories, and private companies to protect an individual’s genomic information from unauthorised collection, disclosure, misuse, or discriminatory exploitation.

Genome data is exceptionally sensitive because it may reveal inherited diseases, biological relationships, ancestry, and characteristics that can affect both the individual and their relatives. Accountability therefore requires more than confidentiality: organisations must justify why genomic data is collected, protect it throughout its lifecycle, and provide remedies when it is mishandled.

In India, genome privacy is not separately codified as an independent fundamental right. Its constitutional foundation lies in Article 21’s protection of privacy, dignity, and personal liberty. The accountability framework is consequently derived from constitutional principles, data-protection law, medical ethics, and judicial decisions concerning DNA testing.

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Accountability Principles

Genome privacy accountability may require the following safeguards:

Lawful collection and consent: Genetic samples should be collected for a clearly defined and lawful purpose. Consent should explain the nature and implications of testing.

Purpose limitation: Genomic information should not be reused for unrelated research, commercial, or identification purposes without a valid legal basis.

Security and confidentiality: Laboratories and institutions should maintain access controls, secure storage, and safeguards against data breaches.

Data minimisation and retention limits: Only necessary genomic information should be retained, for no longer than justified by the purpose or legal requirements.

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

Remedies and oversight: Individuals should have access to complaint mechanisms, investigation, and appropriate legal remedies when misuse occurs.

Accountability also involves maintaining reliable records of sample collection, laboratory testing, access, transfer, and destruction. This helps establish responsibility when genomic information is mishandled.

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 connected privacy with dignity, autonomy, and informational self-determination. This provides the constitutional basis for holding public authorities accountable for unjustified collection or use of genomic information. 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 should not be ordered routinely in paternity disputes. Courts must consider the necessity of testing and balance the interests of all affected persons. The decision supports accountability by requiring justification before intrusive genetic testing is imposed.

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3. Ashok Kumar v. Raj Gupta (2021) 1 SCC 20

The Supreme Court rejected an unnecessary DNA-testing request where the test was not supported by an eminent need. It emphasised balancing privacy against evidentiary necessity. This reinforces the principle that a person cannot be compelled to provide genetic material merely because another party seeks additional evidence.

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4. R. Rajendran v. Kamar Nisha (2025 INSC 1304)

The Court held that compelled DNA testing is a serious intrusion into privacy and personal liberty. Such testing must satisfy legality, legitimate aim, and proportionality. The decision demonstrates judicial accountability by requiring courts to justify genetic intrusion and consider the privacy and dignity of all affected parties.

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Conclusion

The Right to Genome Privacy Accountability requires institutions to act transparently, lawfully, and responsibly when handling genomic information. Indian constitutional law, particularly Puttaswamy and the DNA-testing decisions, provides a foundation for accountability through privacy, dignity, and proportionality. Although genome privacy is not a separately codified fundamental right, organisations must ensure that genetic data is collected only when justified, protected against misuse, and subject to effective oversight and remedies.