Yet, when it comes to studying the disease and understanding why it behaves differently in Indian patients, or which treatments will work best for them, the country is working with one hand tied behind its back.
The problem is not limited to breast cancer. India does not have enough tumour banks to study most of its cancers.
India is home to an estimated 25 lakh people living with cancer, registers more than 14 lakh new patients every year, and records over 5.5 lakh deaths annually. Yet fewer than 10 dedicated cancer biobanks are preserving tumour samples for research, a gap scientists say is slowing the development of better diagnostics, targeted treatments and medicines tailored to Indian patients.
Biobanks are organised repositories that collect and store biological samples such as tumour tissue, blood and DNA, along with patients’ clinical information, for use in future research.
They are considered a critical part of precision medicine, helping scientists understand why cancers behave differently across patients and populations, identify new biomarkers, and develop more personalised treatments.
The shortage comes as India’s cancer burden continues to rise. According to the Global Burden of Disease study, the country’s age-standardised cancer incidence increased from 84.8 cases per 100,000 people in 1990 to 107.2 per 100,000 in 2023, marking a 26.4 percent increase.
“India has close to 100 biobanks across different diseases, but fewer than 10 are dedicated to cancer,” Dr Juhi Tayal, who heads the biorepository at Rajiv Gandhi Cancer Institute and Research Centre (RGCIRC), Delhi, told ThePrint.
“The numbers are completely disproportionate to our population and the growing cancer burden. Without quality tissue repositories, it becomes much harder to carry out meaningful cancer research.”
A commentary in Nature Reviews Clinical Oncology by researchers from IIT-Bombay and the Tata Memorial Centre had warned that well-curated biobanks were essential for cancer research, particularly in low- and middle-income countries where most of the world’s cancer cases occur. More than a decade later, experts say India has made only limited progress.
ThePrint spoke to scientists and clinicians who run some of India’s oldest cancer biobanks — at RGCIRC in Delhi, Tata Memorial Hospital in Mumbai and the National Cancer Tissue Biobank at IIT-Madras.
They pointed to the absence of a dedicated regulatory framework, inadequate funding, and poor collaboration between hospitals, researchers and industry as key reasons why India continues to have so few cancer biobanks despite its rapidly growing cancer burden.
Why biobanks matter
According to Prof. S. Mahalingam, who heads the National Cancer Tissue Biobank (NCTB) at IIT-Madras, every patient with cancer, even if diagnosed with the same type of tumour, may respond very differently to the same treatment because the genetic changes driving their cancers can be different.
“This is not a western problem. It is our own problem — we need to understand what kind of genomic landscape we see in our own cancer patients,” he said.
“Without the tissue sample, you cannot develop that genomic landscape, and without it, you will never know what changes are unique to our population. Understanding those differences is where biobanks become important.”
Researchers use stored tumour samples, blood and DNA, along with years of medical records, to identify the genetic mutations behind different cancers and understand which treatments work best for which patients.
A tumour sample by itself has limited research value, Dr Tayal said.
“What makes a biobank useful is that every sample is linked to long-term clinical information — including the treatment a patient received, whether the cancer returned, and how long the patient survived.”
This information helps scientists discover new drug targets and develop biomarkers — biological indicators that can predict whether a patient is likely to respond to a particular cancer drug before spending lakhs of rupees on treatment.
Running such repositories, however, is expensive.
A study published this year in the Indian Journal of Medical Research by Dr Tayal and her colleagues described the experience of the Rajiv Gandhi Cancer Institute’s head-and-neck cancer biobank.
Between 2018 and 2024, it enrolled around 1,300 patients and stored nearly 13,000 biosamples, including tumour tissue, blood and plasma, together with clinical information. About one-third of these samples have since been shared with academic institutions and industry for biomarker and drug discovery research.
Setting up the facility cost around Rs 4 crore, while maintaining the samples costs about Rs 83 per sample each year.
“The high long-term cost, coupled with the absence of immediate financial returns, discourages many hospitals from establishing biobanks despite their importance for cancer research,” Tata Memorial Hospital director Dr C.S. Pramesh told ThePrint.
A fragmented landscape
India’s few cancer biobanks have largely been built by individual institutions rather than through a coordinated national effort.
According to Dr Pramesh, the Tata Memorial Hospital established India’s first dedicated cancer biobank in the mid-2000s with funding from the Indian Council of Medical Research (ICMR). It now stores nearly 50,000 patient samples, around 10,000 of which have already been used for research.
“This is an investment with no immediate tangible return,” he said, explaining why many hospitals are reluctant to set up similar facilities.
Established in 2014-15 with support from the Department of Science and Technology and IIT-Madras, the National Cancer Tissue Biobank has collected nearly 10,000 samples from patients with different cancers.
It has also developed the Bharat Cancer Genome Atlas, an open-access database of genetic information from Indian cancers, and is creating lab-grown tumour models that allow researchers to test which medicines are most likely to work for an individual patient.
Experts say one of the biggest challenges is long-term patient follow-up. Many public hospitals lose contact with patients after one or two visits, making it difficult to build research-grade biobanks.
Dr Tayal said this is one reason India has so few such facilities, although a large biobank is planned at the upcoming National Cancer Institute campus in Jhajjar.
She added that Rajiv Gandhi Cancer Institute has been able to build long-term datasets because about 92 percent of its patients continue follow-up, allowing researchers to link samples with five to ten years of clinical outcomes.
No national registry, no clear rules
India has no dedicated law governing biobanks and instead relies largely on non-binding ethical guidelines issued by bodies such as the ICMR. Experts say this leaves important gaps in how biobanks should be established, operated or accredited, and no central registry listing the country’s repositories.
Unlike countries such as the US and Canada, where accredited biobanks are listed in national databases after meeting recognised quality standards, India has no official directory.
The closest available is an informal list maintained by the Biobanking Institute Foundation, a private industry body, which identifies fewer than 20 biobanks across all diseases.
Dr Tayal said that the absence of a national registry makes it difficult even for researchers to know how many biobanks exist, let alone for pharmaceutical companies or international collaborators looking to access Indian samples.
She said that tissue donation is voluntary, and without compensation.
“In the US, I have seen advertisements for Alzheimer’s research volunteers. I have never seen that level of awareness in India. Patients are often too distressed at diagnosis to consider donation,” she added.
(Edited by Tony Rai)