India Insights: The GenomeIndia Project
“Ambitious”. That’s the perfect word to describe India’s GenomeIndia Project (GIP). Across India there are 4,600 ethnic groups and, at least, 1600 dialects and languages spoken by the population, making India one of the most diverse in the world. In 2020, the Department of Biotechnology under the Ministry of Science and Technology launched the program aiming to map and decode the many genomes within the country. The project hopes to sequence at least 10,000 genomes from several and establish a genetic database. Furthermore, India seeks to improve its health care system by tailoring diagnosis and overall improving medicine to accommodate the large variety of genomes.
The GIP is based on the Human Genome Project (HGP), which was an international project designed to fully comprehend DNA, known as a genome. The HGP was launched in 1990 and concluded in 2003, after having sequenced 99% of the euchromatic part of the genome; the accuracy percentage reached an extraordinary number, 99.99%.
Having drawn inspiration from HGP and its goals, India decided to launch its own program. However, the country noticed an ethnic gap in the research: the lack of presence of Indian population. To address the disparity, the GIP was developed. The Indian state understood that the current information and databases possessed by global healthcare was built by using Europeans as a reference, meaning that the foundations of medicine are largely Eurocentric. The GIP is also important for comprehending the migratory patterns and evolution history of the populations within India, which will lengthen the country and the population’s understanding of their own history. The program is incredibly ambitious and may lead to a great impact on India’s damaged healthcare system; nonetheless, it is not absent from criticism.
The Project
The scheme is a large-scale initiative that encompasses over 20 research institutions within the nation, expected to develop a genome database of the many different populations in India. So far, 83 ethnic groups have had their DNA collected for research, with the program dividing the gathering evenly between rural, urban, and tribal populations. Regarding the rural population, 36.7% of samples were collected, 32.2% in urban places, and 31.1% in tribal areas. There were challenges concerning the collection of tribal genomes, as these populations are found in remote areas, which made it harder for the program to reach them. Additionally, the unfamiliarity of these tribes with genomes, the project, and its goals, have created some resistance on their willingness to participate. Nevertheless, the program stated that they were able to overcome these challenges.
As previously mentioned, around 20 Indian institutions, academic or research, are involved in the GIP, and over 100 scientists. All parties involved share the hope that this program may reshape the substandard health system, diagnosing, and the field of biotechnology, not only in India, but internationally. The program’s first findings have been published in the most prestigious scientific journal, Nature. Within the findings, the GIP’s first great success has been discovering 180 million genetic variants within the samples collected. Among the variants some are rare, others are liked with diseases; they may as well be specific to India and to communities only found in the country.
Why Is The Project Important?
Adventurous and strenuous, the program may generate crucial change in India’s healthcare system and biotechnology industry, and perhaps diminish the country’s dependence on Western genetic databases. The GIP hopes to develop personalized care for the different populations with distinct genetic variants within the nation. Contemporary medicine is aware that people react to medication in several different ways, some being more resistant and some being more subjective. Since the project will better understand the genomes of its several populations, it may create better and personalized drugs, allowing for a significant improvement in quality of life and life expectancy. Besides developing new medication, dosages for existing ones can be adjusted based on this study and massively reduce the possibility of immediate and future side effects. These endeavors are all aimed at what is called “precision medicine”, a method that approaches medicine as more individual instead of “one-size-fits-all”. For instance, the project has explained that some cancer treatments are more likely to succeed in specific genetic patterns; and, with the genome mapping, certain treatments may lead to better responses.
Furthermore, it is comprehensible that most of medical research has been conducted using Western genomes, since the early periods of medicine. To call India’s population “diverse” is an understatement. The nation comprises a plethora of numerous ethnic groups that, when combined, create what India is today. Several of these groups are tribal and are incredibly underrepresented in contemporary medicine, meaning that research must be executed to bring these groups genomes into the medical field. Without the genetic mapping of the marginalized communities, they will remain receiving treatments don’t reach their potential efficacy-wise.
The GIP may also increase the predictability of diseases. Many health complications derive from mutations and/or inherited genes; thus, mapping the population’s genome will unveil several possible diseases and mutations. This project, then, will be able to support comprehension of genetic family histories, newborn genome analysis, and protective mapping for the likelihood of diseases.
Finally, the GIP has the potential to reduce healthcare costs for those in India. For example, if diabetes is early identified, the treatment will be cheaper at first instance than if the disease develops further. Diabetes can lead to kidney failure, blindness, or even heart diseases, which, at long term, will be very expensive treatments.
The Controversy
Most scientistic and people aware of the program agree that the genetic studies are useful; however, some controversy still surrounds it. Even though the GIP assures data confidentiality, some remain skeptical about it. The program claims that data is safely stored at the Indian Biological Data Centre (IBCD) and the information there is completely anonymous and encrypted. Nonetheless, there is the risk of security breaches and cyber-attacks, which could leak the genetic information of thousands of people. Although India has laws to protect citizens and users’ data, these regulations are very recent and still evolving. Moreover, there’s also the debate of genetic discrimination within the project. So far, the GIP has mapped the genomes of 83 groups, even though there are mora then 4000 across the country. It is unknown how many more genomes the research will explore; however, in order to establish an inclusive and democratic database, the GIP must sample more genetic materials.
