ISSUES

The acronym TEE stands for issues related to Technology/Ethics including social and legal /Education inclusive of training . We take up these one by one.

T for Technology

Genomic and other technologies (including Next Generation Sequencing – NGS & Digital technologies) can generate enormous amounts of knowledge. However if due process of technical validation (accreditation for clinical precision etc.), and holistic analysis is not performed, the translation of such data into knowledge will happen with errors – sometimes even catastrophic.

By Holistic analysis we mean in genomics/NGS, aspects such as contextual interpretation, confirmations on gene-phenotype links with experiments in other model systems (zebrafish, mice etc) comparisons with appropriate population/family references/variants and mapping environment/exposure interplays (i.e., micro biome etc.).

A holistic framework & policy within the technology domain is necessary as we implement such game-changing technologies in a country like India, which is home to more than a billion people, largest/oldest repositories of Biodiversity, history and cultures.

Current Genomic/NGS technologies are said to be “not affordable”. Whole Genome Sequencing (and interpretation) of a human genome using any of the NGS platforms might be as much as Rs. 10 lakhs, while a WES (W Exome Sequencing) might be 1-2 lakhs. While research on new technologies to reduce the cost is being pursued, India might do well to think on what science/technology contributions we could make in cost reduction.

Analysis of Genomic data along with other omic/micro biome and clinical data is needed for planning therapy and health plan/prescriptions in the clinic. This is actually is already being touted as Big data with the Government (DBT/DST/CSIR) already taking cogniscence and making necessary plans to take a grip of the enormous data that is expected – some already available. We are already at a point in time when cost of this computational/theoretical (“bioinformatic”?) analysis is more than the cost of data generation (sequencing etc). Reduction of this Bio informatics cost towards faster and effective translation of the Genomic/omic technologies will require Bioinformatics to penetrate unto college and schools levels. This kind of “Next-Gen-Bioinformatics” is not brute computational power alone but subtle mathematical concepts/architectures that have to be evolved/discovered to be able to capitalize on the opportunity leading to cost reductions and effective translation into health.

Rightly ancient knowledge tells us that we are all “children of nature” – including animals and plants, and man would do best to live in equilibrium with nature. Man has of course the opportunity, a chance to perform the spiritual dharma now – more than ever before – to rise in the “value-space” above the rest of the living/non-living by not alone taking from nature but giving back by contributing.

Science & Technology has advanced sufficiently to reveal systematically the fact that Man is not doing enough to maintain this equilibrium – but in fact on the trajectory to disrupt the equilibrium at his own peril. Scientists must take upon the onus of employing (Omic/IT tools) to reveal and document the need for positive change in lifestyles and outlook towards nature and its precious resources.

Health can be ensured by simultaneously and effectively employing enomic/omic technologies in maintenance of species/habitats, by laying equal emphasis on Environmental (ecological, cultural & social) sustainability, supporting long term frameworks that prefer this even at the cost of some apparent (?) human sustainability issues. But, this will definitely call for changes in human behaviour, lifestyle etc. Notwithstanding, the final goal of “Environmental sustainability” when reached would have also ensured (amply) human sustainability.

It is in this context that the foundation plans to embark on “Holistic” Human Development as mentioned earlier. Scientists as members of the society have a central (and dual?) role to play by actively involving themselves in policy making (ethical, legal, social discussions & policy making) and education, counseling engagements/activities. India has always played a central role in shaping environment friendly human civilization. In these historic times, we in India are faced with the challenge of balancing technology and environment. To help and aid the government and people in this balancing act is the aim of our foundation. Ultimately we must understand technologies made by man should be for holistic health of Environment of which man is an inseparable part.

In the background of the above, it may be said that, the developed countries are a step ahead of us in framing policies to protect their people and societies as they implement Genomic/omic technologies for health and wellbeing.

USA has already in place HIPAA, GINA. The Affordable Care Act (“Obamacare”) also adds to the repertoire aimed at addressing ethical and social interests while protecting human health. I India the Union Ministry of Health and Family Welfare sure must be monitoring the developments in not just USA but in other developed and developing countries as well. Our foundation hopes to engage with the health, S&T and other relevant ministries such as Environment, Social welfare to help construct ethical legal and social policy frameworks meant to safe guard health and environment.

We, having the onus of holistic health, of not just humans but environment as well, are faced with the multi-scale/level challenge of educating & counseling different functional groups of the society for different purposes. Patients of course need education and counseling prior and after taking tests and therapies that involve genomic/omic technologies, Clinicians and healthcare workers need education and training on the technologies to be able to better employ the same tailored/measured to the requirement/purpose. Policy makers, Politicians, Civil society members and other such stake holders are faced with the dual responsibility of holistic education, of finding the root of all disease (not just human, but all biodiversity – as all are related) and finding lasting solutions to the multi-scale crisis trajectory that humans are faced with despite technological advances. Clearly a Ayurveda and Yogasana crash course in the curriculum will not alone solve this impending crisis. While some technology is available and more and more technologies and companies to provide “products” are set to land on the societies, the economic social and cultural costs are also to be calculated. Safeguarding these social, cultural and ecological interests might need intervention(s) at the smallest scales – family (?),with the subtlest forces: social, cultural (i.e., spiritual?) This space will be the foundation’s vision.