Introduction

The Right to Genome Privacy Governance Doctrine Accountability is an emerging constitutional and legal framework concerned with protecting an individual’s genetic information and ensuring that institutions handling genomic data remain answerable for its collection, use, storage, disclosure, and misuse. Genome privacy is not expressly recognised as a separate fundamental right under the Indian Constitution. However, it is closely connected with the right to privacy, dignity, bodily autonomy, and informational self-determination under Article 21.

Genomic information is particularly sensitive because it can reveal inherited traits, disease risks, biological relationships, and information about relatives who have not themselves consented to its disclosure. Therefore, governance must extend beyond individual consent and include institutional safeguards, independent oversight, and effective remedies.

Constitutional Basis and Governance

The doctrine rests on three connected duties:

Legality and purpose limitation: Genetic data should be collected under a lawful basis and for a clearly stated, legitimate purpose. It should not be repurposed for unrelated research, employment screening, insurance decisions, or surveillance without lawful authority and safeguards.

Informed consent and autonomy: Individuals should understand what a genetic test can reveal, who may access the data, how long it will be retained, and whether it may expose information about biological relatives.

Security and accountability: Hospitals, laboratories, research institutions, and data custodians should implement access controls, encryption, audit trails, retention limits, and breach-response procedures. They should be able to explain and justify their handling of genomic information.

The accountability dimension requires more than a privacy notice. It includes independent supervision, transparent policies, investigation of misuse, and accessible remedies such as correction, deletion where legally appropriate, compensation, or judicial review. State action affecting genome privacy must satisfy the constitutional test of legality, legitimate aim, and proportionality.

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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 and as part of the freedoms protected by Part III. It held that privacy has both negative and positive dimensions: the State must refrain from unjustified intrusion and also take measures to protect individuals from privacy violations by non-State actors. Its legality, legitimate aim, and proportionality test provides the central constitutional standard for genome-data governance.

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

The Court held that DNA testing in paternity disputes is highly sensitive and should not be ordered routinely. A court must balance privacy against the need to reach the truth and determine whether the test is eminently necessary. This supports safeguards against unnecessary genetic testing and compelled disclosure.

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3. Selvi v. State of Karnataka, (2010) 7 SCC 263

The Supreme Court held that involuntary narcoanalysis, polygraph, and brain-mapping tests violate constitutional protections relating to personal liberty and mental privacy. Although the case did not concern genomic data, it is relevant by analogy: scientific investigation must respect bodily integrity, autonomy, and procedural safeguards.

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

The Supreme Court cautioned against ordering DNA testing of a child in matrimonial litigation without sufficient justification. The decision reflects the need to protect the child’s privacy and welfare while preventing intrusive testing from being used as a routine evidentiary tool.

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Accountability and Conclusion

A genome privacy governance system should require organisations to identify the lawful basis for processing, restrict access to authorised personnel, preserve confidentiality, document data-sharing, and establish procedures for complaints and remedies. Genetic data should not be retained indefinitely or disclosed merely because it may be commercially or scientifically useful. Research involving genomic information should also consider risks to biological relatives and communities, not only the participant who supplied the sample.

The doctrine’s accountability principle means that institutions must demonstrate that their practices are lawful, necessary, proportionate, secure, and transparent. Indian courts have not yet recognised a separate, fully codified “Right to Genome Privacy Governance Doctrine Accountability.” Rather, it is an emerging application of constitutional privacy, bodily autonomy, dignity, and the safeguards developed in DNA-testing cases.

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