An IIPM Initiative
Friday, November 15, 2019

Hope in Kalavari


UP’s Jaunpur district is slowly becoming a major centre for detecting genetic anomalies. Anil Pandey reports
ANIL PANDEY | Issue Dated: July 28, 2013, New Delhi
Tags : Uttar Pradesh | Jaunpur | Kalavari village | Genetic diseases | The Genome Foundation | BHU | DNA mapping |

In Uttar Pradesh’s Jaunpur district, a breathtaking new experiment is on the anvil. The remote and backward Kalavari village in this district is on its way to becoming a major centre for detecting genetic anomalies and providing testing facilities for patients, who for long have had no other place to go.

Genetic diseases remain a problem area in India, particularly in its remote backwaters. Lack of understanding and proper medicare coupled with extreme poverty and superstition take a heavy toll of human lives. Tragically, there remains no count of those affected.

The Genome Foundation, a Hyderabad-based non-profit foundation, plans to change things. It is in the process of setting up a research and referral unit in this village which will examine the causes for genetic diseases and provide solutions to victims affected.

By all accounts, this is the first initiative of its kind in this area, the credit for which has to go to Benares Hindu University (BHU) vice chancellor and well known genetic scientist Dr Lalji Singh. Singh is widely acknowledged as the father of DNA mapping in India. For his public service to genetic science, Singh has also been honoured with the Padamshree.

The Genome Foundation itself has several eminent scientists on board: Well known atomic energy scientist and former ISRO boss K Kasturirangan, agriculture scientist and former CSIR chief RA Mashelkar, father of Green Revolution in India Dr. S Swaminathan, renowned genetic scientist Dr. PM Bhargava and top economist Dr C Rangarajan, are all part of the project which also includes other big and some upcoming names from the world of science.

The harsh reality of genetic diseases is that they are largely incurable; the only possible deterrent is advance knowledge that can act as preventive care. Towards that end, genetic research becomes a whole new body of work and is gaining increasing popularity worldwide. In the villages of rural India, apart from diabetes and heart diseases which are common, cases of Thallesemia and muscular dystrophy abound.

Lalji Singh told TSI, ‘‘When a child is in the womb, through DNA mapping, any future ailment can not just be identified but cured as well. It is towards this end that we plan to install a testing machine in Kalavari. Unfortunately, due to lack of funds, the project has been delayed.’’

Breast cancer is fast spreading among women in India and malnutrition claims thousands of children every year. But with modern science along with gene mapping can help provide cure and relief to the thousands suffering from genetic diseases.

Dr Lalji Singh is in search of such a person or institution which can gift them a machine of this kind. Since testing for genetic diseases is very expensive and well out of reach of the common man, for the time being Kalavari will be the base where samples are collected and then sent to the laboratories of the Hyderabad-based Centre for Cellular and Molecular Biology.

According to the Genome Foundation, they have ambitious plans to open up a genetic testing centre in every district while the main laboratory and training centre will be based in Hyderabad. Towards that end, the central government’s science and research department has given them an Rs 3.5 crore assistance to set up a laboratory while the Andhra Pradesh government has already allotted a 5 acre land for the entire project.

But in the absence of a proper building, the laboratory project is yet to take off the way it should have. Lalji Singh, however, believes that instead of approaching the government, it is the people who can help. ‘‘Anyone can become a member of the Genome Foundation on payment of Re 1, a small sum. If all countrymen participate, we have Rs 120 crores in our kitty. We can open many centres throughout the country.’’

The foundation plans to put into place a comprehensive data bank where gene profiling will be undertaken on a large scale which can help in identifying various diseases and work towards preventive care. As a first step, research has already started on the kinds of genetic diseases which prevail in different districts. In one such survey conducted in Andhra Pradesh and eastern UP, more than 30,000 gene samples have already been collected.

Says Lalji Singh: ‘‘During the course of our survey, we realized that a vast majority of people were not aware of genetic disorders and have for years believed in various kinds of superstitions (including ghosts) as the possible cause of their ailments.’’ Once the foundation establishes itself, things should change for the better.

The Kalavari centre was set up three years ago. Every week, a team of doctors from the BHU come down here and there are virtually thousands of people who come to them with their ailments. Three years may not be a very long time, but the kind of work the Genome Foundation is doing here has given hope to a lot of people. This has a two-pronged impact; one, it helps provide modern scientific healthcare and two; it breaks down centuries-old superstition.For the very poor people in Jaunpur and neighbouring districts in UP, it is both a life giver and a saver.

Rate this article:
Bad Good    
Current Rating 3.6
Previous Story

Previous Story

Post CommentsPost Comments

Issue Dated: Feb 5, 2017