New Delhi: Yearly on 18 August, the world marks World Breast Most cancers Analysis Day, a reminder that consciousness alone doesn’t save lives, analysis does. In India, that reminder cuts deep.
India is house to an estimated 25 lakh folks dwelling with most cancers, registers greater than 14 lakh new sufferers yearly, and information over 5.5 lakh deaths yearly. But fewer than 10 devoted most cancers biobanks are preserving tumour samples for analysis, a niche scientists say is slowing the event of higher diagnostics, focused therapies and medicines tailor-made to Indian sufferers.
Biobanks are organised repositories that accumulate and retailer organic samples similar to tumour tissue, blood and DNA, together with sufferers’ scientific info, to be used in future analysis.
They’re thought of a crucial a part of precision medication, serving to scientists perceive why cancers behave otherwise throughout sufferers and populations, determine new biomarkers, and develop extra personalised therapies.
The scarcity comes as India’s most cancers burden continues to rise. In keeping with the World Burden of Illness research, the nation’s age-standardised most cancers incidence elevated from 84.8 instances per 100,000 folks in 1990 to 107.2 per 100,000 in 2023, marking a 26.4 p.c enhance.
“India has near 100 biobanks throughout totally different ailments, however fewer than 10 are devoted to most cancers,” Dr Juhi Tayal, who heads the biorepository at Rajiv Gandhi Most cancers Institute and Analysis Centre (RGCIRC), Delhi, informed ThePrint.
“The numbers are fully disproportionate to our inhabitants and the rising most cancers burden. With out high quality tissue repositories, it turns into a lot more durable to hold out significant most cancers analysis.”
A commentary in Nature Critiques Scientific Oncology by researchers from IIT-Bombay and the Tata Memorial Centre had warned that well-curated biobanks had been important for most cancers analysis, notably in low- and middle-income nations the place a lot of the world’s most cancers instances happen. Greater than a decade later, consultants say India has made solely restricted progress.
ThePrint spoke to scientists and clinicians who run a few of India’s oldest most cancers biobanks — at RGCIRC in Delhi, Tata Memorial Hospital in Mumbai and the Nationwide Most cancers Tissue Biobank at IIT-Madras.
They pointed to the absence of a devoted regulatory framework, insufficient funding, and poor collaboration between hospitals, researchers and business as key the reason why India continues to have so few most cancers biobanks regardless of its quickly rising most cancers burden.
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Why biobanks matter
In keeping with Prof. S. Mahalingam, who heads the Nationwide Most cancers Tissue Biobank (NCTB) at IIT-Madras, each affected person with most cancers, even when identified with the identical sort of tumour, might reply very otherwise to the identical remedy as a result of the genetic modifications driving their cancers will be totally different.
“This isn’t a western downside. It’s our personal downside — we have to perceive what sort of genomic panorama we see in our personal most cancers sufferers,” he stated.
“With out the tissue pattern, you can’t develop that genomic panorama, and with out it, you’ll by no means know what modifications are distinctive to our inhabitants. Understanding these variations is the place biobanks turn into necessary.”
Researchers use saved tumour samples, blood and DNA, together with years of medical information, to determine the genetic mutations behind totally different cancers and perceive which therapies work greatest for which sufferers.
A tumour pattern by itself has restricted analysis worth, Dr Tayal stated.
“What makes a biobank helpful is that each pattern is linked to long-term scientific info — together with the remedy a affected person acquired, whether or not the most cancers returned, and the way lengthy the affected person survived.”
This info helps scientists uncover new drug targets and develop biomarkers — organic indicators that may predict whether or not a affected person is probably going to answer a selected most cancers drug earlier than spending lakhs of rupees on remedy.
Operating such repositories, nevertheless, is dear.
A research printed this yr within the Indian Journal of Medical Analysis by Dr Tayal and her colleagues described the expertise of the Rajiv Gandhi Most cancers Institute’s head-and-neck most cancers biobank.
Between 2018 and 2024, it enrolled round 1,300 sufferers and saved practically 13,000 biosamples, together with tumour tissue, blood and plasma, along with scientific info. About one-third of those samples have since been shared with educational establishments and business for biomarker and drug discovery analysis.
Establishing the ability value round Rs 4 crore, whereas sustaining the samples prices about Rs 83 per pattern annually.
“The excessive long-term value, coupled with the absence of rapid monetary returns, discourages many hospitals from establishing biobanks regardless of their significance for most cancers analysis,” Tata Memorial Hospital director Dr C.S. Pramesh informed ThePrint.
A fragmented panorama
India’s few most cancers biobanks have largely been constructed by particular person establishments moderately than by way of a coordinated nationwide effort.
In keeping with Dr Pramesh, the Tata Memorial Hospital established India’s first devoted most cancers biobank within the mid-2000s with funding from the Indian Council of Medical Analysis (ICMR). It now shops practically 50,000 affected person samples, round 10,000 of which have already been used for analysis.
“That is an funding with no rapid tangible return,” he stated, explaining why many hospitals are reluctant to arrange related services.
Established in 2014-15 with help from the Division of Science and Expertise and IIT-Madras, the Nationwide Most cancers Tissue Biobank has collected practically 10,000 samples from sufferers with totally different cancers.
It has additionally developed the Bharat Most cancers Genome Atlas, an open-access database of genetic info from Indian cancers, and is creating lab-grown tumour fashions that enable researchers to check which medicines are almost definitely to work for a person affected person.
Specialists say one of many greatest challenges is long-term affected person follow-up. Many public hospitals lose contact with sufferers after one or two visits, making it troublesome to construct research-grade biobanks.
Dr Tayal stated that is one motive India has so few such services, though a big biobank is deliberate on the upcoming Nationwide Most cancers Institute campus in Jhajjar.
She added that Rajiv Gandhi Most cancers Institute has been in a position to construct long-term datasets as a result of about 92 p.c of its sufferers proceed follow-up, permitting researchers to hyperlink samples with 5 to 10 years of scientific outcomes.
No nationwide registry, no clear guidelines
India has no devoted legislation governing biobanks and as a substitute depends largely on non-binding moral tips issued by our bodies such because the ICMR. Specialists say this leaves necessary gaps in how biobanks ought to be established, operated or accredited, and no central registry itemizing the nation’s repositories.
In contrast to nations such because the US and Canada, the place accredited biobanks are listed in nationwide databases after assembly recognised high quality requirements, India has no official listing.
The closest accessible is a casual listing maintained by the Biobanking Institute Basis, a personal business physique, which identifies fewer than 20 biobanks throughout all ailments.
Dr Tayal stated that the absence of a nationwide registry makes it troublesome even for researchers to know what number of biobanks exist, not to mention for pharmaceutical corporations or worldwide collaborators seeking to entry Indian samples.
She stated that tissue donation is voluntary, and with out compensation.
“Within the US, I’ve seen ads for Alzheimer’s analysis volunteers. I’ve by no means seen that degree of consciousness in India. Sufferers are sometimes too distressed at prognosis to contemplate donation,” she added.
