Could Genome Research Council under public-private partnership be a way forward for India’s human genome program?
In the last 25 years genomic technologies have evolved faster than the computing technologies, and the forecast of genomic market of $140 billion by 2026 is indeed an underestimate. However, in terms of market size it is bigger than the pharma mar...
Recent news from CSIR and Dept of Biotechnology to initiate India-specific human genome sequencing program is indeed encouraging and a great step forward. It is important to acknowledge the effort and support by the scientific and political dispensation at the helm of affairs, to provide necessary approval. This dream could have been achieved more than 25 years ago in 1993, when the three leading genomic experts Prof. Lalji Singh, Prof. Samir Brahmachari and Prof. Partha Majumdar wanted India to be a part of International Human Genome mapping program. Had India participated in the program with its own terms and conditions the scenario of genomic technologies, translational initiatives and genetic counselling would have been completely different today.
This is evident from the growth and developments in genomic front in China. China agreed to be a part of this International Human Genome mapping program and today it stands as a world leader in many spheres of genomic initiatives, which is evident from the growth of Beijing Genome Institute (BGI) becoming the largest genomic company in the world. Even its offshoots such as MGI which after acquiring the second largest genomic technology company ‘The Complete Genomics’, pose a serious threat to the leaders of genomic technologies such as Illumina.
In the last 25 years genomic technologies have evolved faster than the computing technologies, and the forecast of genomic market of $140 billion by 2026 is indeed an underestimate. However, in terms of market size it is bigger than the pharma market even today. Besides, if one has to evaluate the positive versus negative outcome one can be very sure that genomic industry has only positive outcome which can either be big or small but no negative outcome. The Human Genome program started by Prof. James Watson and the Human Genome Diversity program conceptualised by Prof. Cavalli Sforza had already proven the impact of the human genome initiatives. In fact, in today’s world it is needless to say that every researcher is dependent on the information generated from these initiatives which definitely defines the quantum of loss that India had to suffer due to non-participation in the International Genome mapping program.
In the last 25 years several countries initiated their own One Million genome program and have either completed or nearing completion. These countries include, USA, UK, China, Japan, Australia, France, UAE (Dubai), Netherland, Finland, Germany, Turkey, Estonia, Singapore and Saudi Arabia. It is also important to note that Indians have participated as a community in the genome initiatives of these countries too.
Therefore, the genomic data for certain Indian communities is already available from various sources which enables the international community to play with these information and develop their own genomic driven AI technologies and initiatives, leaving very little for India to achieve from its own Indigen. We have always been a late starter not because we preferred this way, but the back channel negative feedback mechanisms works stronger than the support for the positive feedback system. Unfortunately, the blame simply goes to the bureaucrats who act as a link between scientists and the political system.
In this regard, I would like to appreciate the present government's effort to bring in experts from various fields and enter the bureaucracy through lateral entry schemes. This might bring in some cheer to the scientific community also, as this might help them in policy making. We all hail space programs, be it communication mission, Mars mission or Moon mission. Though one might still question the impact of mega projects like Mars mission and Moon mission in human life, any initiative on genome mission, I must say, has only a positive outcome for human welfare. In fact, the genomic initiatives have the potential to fare better than space programs in terms of output, accountability and economic viability and better impact on human lives. Anyway, better late than never, as India holds the hotspot (diversity evolved inside a region over a long period of time) and melting pot (result of a more recent mixture) of genomic diversity due to its unique cultural and linguistic diversity.
To get a better outcome of the data one needs to carry out such initiatives in a mission mode program and integrate these genomic data with health registry, UID and census registry, to avoid duplicity. However, the priority should also be for utmost privacy of the individual concerned. Such initiatives cannot run on half-hearted approach, therefore government should also conceptualise a central repository of the data generated. If Government of India integrates its data portals one can be very sure that it will start getting its returns very quickly and recover the investment in no time. This is evident from the success of Beijing Genome Institute (BGI) and PPP model of SNP consortium of US (The SNP Consortium [TSC] established in 1999 by 10 major pharmaceutical companies, charitable organisation The Wellcome Trust, and five leading academic centers in the US). But yes to achieve maximum output and accountability government should strengthen its capabilities for data repositories of genomic and health data very precisely and under strict regulatory norms.
This needs to be considered very seriously. Having funding from multiple agencies such as DBT, CSIR,(as of now) and ICMR, DST (possibly in future) for the human genome sequencing will also have its own caveats, as each may have its own administrative and bureaucratic norms. Therefore, there is a need for integrating the funding resources for greater accountability and framing of guidelines for such research initiative in lines of ISRO. This reminds me of a communication with Prof. Lalji Singh way back in early 2005 when I suggested that India should have its own research council for genomic initiatives in the name of Genome India or Genome Research Council. Prof. Lalji Singh immediately responded very positively, but was also very sceptical of gaining support from the scientific community. This was also evident from his prior experience where a few scientists went public against such initiatives.
Therefore, conceptualising a Genome Research council or Genome India as a separate body is important so that the output of this INDIGEN (Indian Genome Initiative) can be regulated and monitored as a mission mode program, with greater accountability and precision rather than endangering it from the administrative and bureaucratic norms of individual agencies or the ego clashes of respective scientists and institutes. The Genome Research council should also establish linkages with philanthropic individuals or companies and run in the form of PPP model. It should also tap the CSR initiatives of various companies or industrial houses by carefully drafting the guidelines for sharing of resources and information.
The strategy has to be regulated and monitored by the Government unlike in the west where various CSR initiative or charitable organisations run their own research initiatives with no governance from the Govt agencies. India can tweak this to better suit the sensitivity of the govt and the CSR partner with consensus on regulatory norms and data privacy. The initiatives taken by Tatas and Infosys in this regard is indeed commendable. But they should partner with the government or the genetic societies that are deeply involved with human genetic activities to identify the talent pool and expertise available in the country. The general objective of the PPP model of the Genome India or Genome research council should be for the public good and translational initiatives. Even the Big Data omics based AI should also be an integral part of the same. The translational initiatives should be taken forward by appropriate licensing and regulatory norms.
(The author is President, Indian Society of Human Genetics.)