Experts call for protecting genetic data from misuse in a changing landscape

Why in News?

At the Biotech Conclave 2026 in Chennai, experts highlighted advances in genetic testing, gene editing and precision medicine while calling for stronger safeguards against the misuse of genetic information.

Applications of genetic data-based technologies:

The rapid expansion of genome sequencing, genetic testing, gene editing and precision medicine is transforming healthcare. Genetic data can help diagnose rare diseases, predict disease susceptibility and tailor treatments. 

• Diagnosis of rare diseases: Whole-exome sequencing can identify genetic causes of unexplained developmental disorders in children, providing diagnostic clarity and guiding care.
• Disease-risk assessment: Inherited harmful BRCA1/BRCA2 variants indicate increased breast and ovarian cancer risks, enabling appropriate surveillance and preventive strategies.
• Precision medicine: Genetic information helps select suitable treatments; for example, certain EGFR mutations in lung cancer indicate potential benefit from EGFR-targeted medicines. Pharmacogenomics similarly helps guide drug and dose selection.
• Carrier screening: Testing for beta-thalassaemia or sickle-cell disease can identify carriers and support informed reproductive choices through genetic counselling.
• Gene therapy and editing: Casgevy, a CRISPR-based treatment, edits patients’ blood-forming stem cells to increase fetal haemoglobin production in sickle-cell disease.
• Research and public health: Genomic datasets help identify therapeutic targets and guide screening. GenomeIndia’s 10,000 sequenced genomes from 83 population groups provide a reference for understanding India’s genetic diversity. 

The UAE introduced mandatory premarital genetic testing for Emiratis planning to marry from January 2025, covering 570 genes associated with more than 840 conditions. 

Concerns Associated with Genetic Data: 

A. Data-related risks: 

• Privacy of genomic data: Genomic data is permanent, highly personal and familial. An individual’s genetic information can reveal information about parents, siblings and children who may never have consented to testing.
• Data ownership and control: Ambiguity remains over whether genomic data should be controlled by the individual, family, community, state, research institution or private company. This raises questions about access, commercial use, withdrawal of consent and secondary use of genetic information.
• Cybersecurity risks: Large genomic databases are attractive targets for cyberattacks. A breach could expose not merely names and medical records but potentially an individual’s biological identity and disease susceptibility, making strong encryption, access controls and audit mechanisms essential.
• Commercial exploitation: Private companies can derive considerable commercial value from genomic information through genetic testing, drug discovery and data analytics. This raises concerns about fair benefit-sharing, particularly when genetic resources are obtained from vulnerable or indigenous communities.
• Regulatory gaps: India’s genomic sector operates through a combination of constitutional privacy protection, the Digital Personal Data Protection Act (DPDP Act), 2023, sectoral regulation and research-ethics guidelines. However, general data-protection provisions may not fully address the permanent, predictive and familial nature of genetic data.

B. Technology- and society-related risks:

• Germline and embryonic gene editing: Somatic gene editing affects the treated individual, whereas germline or embryonic editing could potentially affect future generations. This raises concerns regarding intergenerational consent, unintended genetic changes and irreversibility.
• Biosecurity and dual-use risks: Genomic knowledge has dual-use potential. Technologies developed to understand diseases and engineer beneficial organisms could potentially be misused for harmful biological research, pathogen modification or other biosecurity threats.
• Genetic discrimination: Employers, insurers or social institutions could potentially misuse genetic information to discriminate against people who have a predisposition to particular diseases. 
• Community stigma: Genomic findings associated with particular castes, tribes, regions or ethnic groups could be misinterpreted and reinforce existing stereotypes.  

India’s Existing Safeguards:

• Constitutional protection: The K.S. Puttaswamy judgment (2017) recognised privacy as a fundamental right and established informational privacy as an important component of individual dignity and autonomy. This provides a constitutional foundation for protecting genetic information.
• General data protection: The DPDP Act, 2023, along with the DPDP Rules, 2025, provides India’s general framework for digital personal data. However, implementation is phased, and all substantive obligations are not fully operational. 
• Research ethics: ICMR’s 2017 guidelines address consent, confidentiality, genetic counselling and sample storage, but do not replace comprehensive statutory protection against discrimination and commercial misuse. ICMR-DBT’s 2019 gene-therapy guidelines prohibit germline and in-utero gene therapy.

Way Forward: 

• India should develop sector-specific genomic-data rules or legislation covering sensitive genomic information, permissible purposes of collection, retention, secondary use, cross-border transfers, research and commercial access, and individual rights and remedies.
• Consent should be informed, purpose-specific and understandable, with clear disclosure of whether genetic samples may be used for treatment, research, commercial development or future studies.
• Adopt privacy- and security-by-design: Genomic repositories should employ encryption, pseudonymisation, strict access controls, audit trails and robust breach-response mechanisms from the point of data collection itself.
• Ensure equitable benefit-sharing: Communities contributing genomic information should benefit fairly from research and commercial applications arising from it. Public-private partnerships should therefore ensure transparency, accountability and benefit-sharing.
• Regulate gene editing responsibly: India should clearly distinguish between therapeutic somatic gene editing, germline or embryonic editing, and genetic enhancement, with progressively stronger scientific and ethical scrutiny as the potential risks increase.
• Prevent genetic discrimination: India should establish explicit safeguards against the use of genetic information for unfair employment, insurance and social discrimination.

India must therefore build a trusted genomic ecosystem based on informed consent, privacy-by-design, cybersecurity, non-discrimination, ethical oversight and equitable benefit-sharing. 

The objective should be to ensure that genomic innovation expands the possibilities of healthcare without turning an individual’s biological identity into a source of exploitation or discrimination.

UPSC PYQ 2017

Q. With reference to agriculture in India, how can the technique of ‘genome sequencing’, often seen in the news, be used in the immediate future?

1. Genome sequencing can be used to identify genetic markers for disease resistance and drought

tolerance in various crop plants.

2. This technique helps in reducing the time required to develop new varieties of crop plants.

3. It can be used to decipher the host-pathogen relationship in crops.

Select the correct answer using the code given below :

(a) 1 only

(b) 2 and 3 only

(c) 1 and 3 only

(d) 1, 2 and 3

Answer: (d)