Indian Cancer Genome Atlas

An organic national mission for a clinically correlated multi-omics database for cancer in India

Co-authored with Suveera Dhup

Why focus on cancer in India?

Cancer is surpassing infectious disease, as a major public health issue. One in nine Indians face the risk of developing cancer. There are 1.5 million new cases per year, with 800,000 deaths, with the most common cancers being breast, oral and cervical cancers. The burden of disease is expected to increase 12.8% by 2025. “Standard-of-care” treatment protocols (both traditional chemotherapy as well as targeted therapies) often have limited efficacy in the Indian population.

What are some of the challenges to cancer care in India?

Cancer awareness is low, even among healthcare providers. Current screening methods are costly and ineffective in the Indian context. Some misconceptions link cancer solely to lifestyle and environment. Social stigma, particularly for women, and economic concerns are barriers to be addressed individually and collectively, with sensitivity to the local context.

Why will a national database help?

Cancer is a genetic disease and India is under-represented in genomic research studies for cancer. Though 20% of the population of the world, Indian genetic representation in research studies is only 0.2% with 86% of all studies based on Caucasian populations. CSIR’s IndiGen program highlighted that ~32% of variants discovered were unique to India. The lack of comprehensive molecular data on cancers in India, India’s unique genetic, environmental, and socio-cultural factors limits the understanding of cancer biology, the heterogeneity of the disease and response to treatment.

What is the ICGA foundation?

The ICGA foundation is a section-8 non-profit based in India, modeled after TCGA at the Broad Institute at MIT. ICGA is in the process of creating a comprehensive, freely accessible database of molecular profiles with clinical correlates, of cancers in India. The goal of the effort is to support the patient and clinical research community, learn from the data and create targeted guidelines for cancer prevention, screening, detection, treatment and management in India. It is an indigenous program designed for Indians and built in India. It aligns with the Indian government’s vision of “Atmanirbhar Bharat” (self-reliant India).

The first cancer of focus is Breast Cancer.

Why focus on Breast Cancer in India?

Breast cancer is the leading cancer in Indian women.

Indian women often present at younger ages (30s/40s) with aggressive, advanced stage disease and have lower 5-year survival rates (< 60%) as compared to the western countries(> 80%). The disease also burdens families emotionally and financially. Sadly, India is also home to the most “cancer orphans” in the world and this number is only increasing.

Given that Indian women often present with aggressive disease (Triple Negative Breast Cancer — TNBC), it becomes critical to understand the biology specific to sub-groups within India, identify unique biomarkers and to eventually develop tailored risk assessment algorithms, screening, diagnosis and treatment modalities and protocols, unique to India and deployable in both urban and rural settings.

How will ICGA create this national databank?

ICGA collaborates with leading institutions across India and cements partnerships with experts across India. Through these participating clinical institutions, ICGA collects tumor tissue samples from consenting cancer patients, under the umbrella of a non-therapeutic/observational clinical trial registered with the Clinical Trial Registry of India.

How is the data collected and processed?

Using a standardized and rigorous protocol for data collection, the samples are processed through advanced next-generation multi-omics sequencing techniques. Whole genome sequencing (WGS), RNASeq, epigenomics, proteomics datasets are created in addition to relevant clinical information and metadata. To protect patient privacy, data is de-identified and then secured with the highest standards of data security, and is available to authorized researchers for investigation.

What is ICGA’s journey so far?

In October 2023, ICGA successfully hosted it’s 4th conference in Pune, India. Details are indevelopment and will be published soon. More information will soon be available on www.icga.in.

What is next?

• ICGA’s breast cancer initiative has a goal of enrolling, collecting and processing data from 1000 patients with breast cancer, by the end of 2024. The goal is to ultimately sequence 5000 patients with breast cancer with representation across geography and ethnicities.
• Expanding the consortium of participating institutions.
• Designing and implementing technology and infrastructure investments.
• Enabling a collaborative learning community of researchers, clinicians, informaticists, computer scientists.
• Generating peer-reviewed research from the ICGA dataset.
• Building a financially self-sustaining model based on public-private partnerships and funding.

How can I get involved and help?

If you’re an institution that would like to join the consortium, are a patient or family member of a patient who’d like to participate or are interested in making a financial contribution, please reach out to communications@icga.co.in.

Cancer care in India is on the brink of a revolutionary transformation, and the ICGA Foundation’s efforts are leading the way. Join the journey towards better cancer care for all in India.