Inauguration of “National Biobank”
On July 06, 2025, the Council of Scientific & Industrial Research (CSIR) - Institute of Genomics and Integrative Biology (IGIB) inaugurated the “National Biobank” to manage, preserve and store biological samples linked with corresponding lifestyle, clinical, and genomic data. While inspired by global models like the UK Biobank, this infrastructure is specifically designed for India’s demographic and genetic diversity. It now becomes the backbone of India's longitudinal cohort study, Phenome India- CSIR Health Cohort Knowledgebase (PI-CHeCK).
What is Phenome India Project?
To give context, on December 07, 2023, CSIR launched the “Phenome India- CSIR Health Cohort Knowledgebase (PI-CHeCK), a flagship project designed to identify India-specific risk factors for cardio metabolic diseases and to support the long-term goal of developing personalized and precision medicine suited to Indian populations. This study, conducted in collaboration with experts and participants from various CSIR labs across the nation, seeks to provide valuable scientific insights, marks a significant step in building an India-specific scientific health database.
PI-CHeCK is set out to build a pan-India longitudinal health cohort, a long term to track health data across diverse populations. This project will collect comprehensive data, including clinical questionnaires, lifestyle and dietary habits, body composition measurements, scanning-based assessments, blood biochemistry, and molecular assay-based data. This longitudinal approach helps uncover patterns in disease onset, lifestyle shifts, and treatment response, which is essential for understanding health outcomes in Indian contexts. PI-CHeCK with National Biobank as its backbone enables high-resolution data that can support AI-driven diagnostics, drug discovery and gene-based therapies.
Bigger Picture
The National Biobank alongside the PI-CHeCK project is part of a broader national effort to build a self-reliant health data ecosystem. The IndiGen/Genome India Programme, another CSIR initiative, focuses on whole genome sequencing of diverse Indian populations. It aims to identify genetic variants associated with diseases, improve diagnosis and treatment, enable carrier screening, and facilitate pharmacogenetic testing.
In parallel, the Indian Cancer Genome Atlas (ICGA) launched India’s first comprehensive cancer multi-omics data portal on September 21, 2024. This free-access platform that provides clinically correlated genomic data to support cancer research and precision medicine. Supporting all of these, the Indian Biological Data Center (IBDC) is India’s first open-access national repository for life sciences data generated from publicly funded research.
What’s emerging is an integrated ecosystem with National Biobank, Phenome India, IndiGen, ICGA and IBDC working together to form the foundation for precision medicine and personalized healthcare in India, rooted in Indian data, designed for Indian bodies, and capable of transforming how we detect, treat, and prevent disease at scale.
Data Privacy of the data subjects
As data privacy lawyer, I can’t help but notice the sheer volume and sensitivity of personal data involved in these initiatives, be it biological samples, genomic data, health histories, lifestyle information. It’s encouraging to see the Indian government taking ambitious steps toward building this scientific infrastructure, and I presume that measures like informed consent, data security, and controlled access are being implemented as part of these programs.
That said, when certain datasets are made openly or freely accessible, it becomes especially important to ensure that strong anonymization or tokenization techniques are consistently applied. Given how uniquely identifiable genomic data can be, this is not just a technical safeguard, it’s a key element of protecting individual privacy.
As these initiatives continue to grow in scope and impact, it would further strengthen public trust to see the government voluntarily align itself with the same standards expected of private entities under the Digital Personal Data Protection Act. While the law may not impose similar obligations on government bodies, adopting clear accountability practices such as defined purpose limitations, transparent governance, and strong data protection protocols would reflect commitment to upholding data privacy in both spirit and substance.
Author: Mr. Jay Datta, Associate
