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Human Genetics Extension Programme

Human Genetics Extension Programme – Anthropological Survey of India

\r\n1. Molecular Characterization of Haemoglobinopathies and Beta -Thalassaemia in West Bengal, conducted by the Head Office Team, Kolkata\r\n2. Haemoglobinopathies and Sickle Cell Anemia in Vidharbha Region, Maharashtra\r\n\r\n

Community Genetics

\r\nInherited disorders associated with the human haemoglobin, both quantitative and qualitative, that is ‘haemoglobinopathies’ have long been identified to specific regions of the world. Problems related to these disorders extend from a severe painful short life to the deep-rooted cultural practice of mate selection. India being a large multiethnic country with an alarming rate of such disorders continues to fight against haemoglobinopathies, especially ß – thalassaemia. Of late, there has been a growing awareness of the problem, after the issue has been addressed to by many disciplines and taken up by a galaxy of scholars.\r\n\r\nChallenges facing the ‘Zero-Thalassaemic’ drive remain exclusively in assessing and extending relevant knowledge and education of these deleterious genetic disorders to the general masses. In the Indian context, a complex mosaic of identities and preferences prevail for proper acceptance of the facts and the choices that are left with to take cognitive decisions by the probable beneficiaries. One needs to judge / evaluate the level of awareness and attitude of an apparently larger section of populace prior to the implementation of every intervention strategy to prevent haemoglobinopathies, especially the ß – thalassaemia.\r\n\r\nIn India, about 10000 ß thalassaemic children are added every year and about 40 million potential carriers of the genes for haemoglobinopathies makes our country a high risk belt for the haemoglobinopathies. Prevention measures that are available till now are yet to be evaluated in terms of its benefit and acceptance by the people. Much has been said of the clinical management and we know of the molecular spectrum here, in the country. However, a clear picture of the epidemiology of haemoglobinopathies along with its varied patterns of distribution is yet to be fully outlined. The outcome of the ongoing research works in this line need to be accumulated and shared.\r\n\r\nOne important issue of every preventive curriculum that deserves special attention is the community perspectives of the disorder under reference. The unique social organization of our country provides a wide scope towards an understanding of the epidemiology of haemoglobinopathies and the perspectives of different communities. Anthropologists have earmarked a number of populations with exclusive cultural specificities to be the high risk groups for the haemoglobin disorders. But most of those studies have not been followed up in terms of intervention and/or post-intervention evaluation. As a consequence we have a rising incidence of severe thalassaemic children in the country.\r\n\r\nWe understand that like the other high-risk zones in the country, the eastern part of the country also harbours the dreaded genes for haemoglobinopathies in an alarming frequency. Cases of thalassaemic births are reportedly increasing in West Bengal. The need for a well-structured prevention agenda is well understood in this part. Screening at a massive level preceded by an awareness drive is justified as an initial step for a prevention strategy. Anthropological Survey of India has initiated a massive screening drive in that line of action as a part of the community genetics extension program, presently being implemented in West Bengal. With a state of the art molecular detection facility and well standardized screening methods; the Survey has till date screened more than 6000 young target group individuals from the southern part of the state. The study is presently concerned with an identification of the carriers for haemoglobinopathies in the villages of the southern most point of the South 24-Parganas district in West Bengal. The results thus far suggest that the frequency of ß – thalassaemia carriers and HbE are really alarming in this part of the country. More so the frequencies are found to be exclusively high. Cases of other sporadic haemoglobin variants and rare ß – thalassaemia mutations were picked up for an in-depth molecular analysis. Picture of the haemoglobinopathies in this part of the state requires an immediate implementation of preventive measures.\r\n\r\n

Objectives

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  • To initiate an extension program for awareness development and provide adequate education among the identified high-risk target groups regarding Hemoglobinopathies on a long term basis Premarital Counseling and Awareness Development Program
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  • To report the frequency distribution of Hemoglobinopathies among the populations of the study area through mass screening and detection ( Mass Screening)
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  • To see the dispersal of the spectrum of mutations and genetic variation of Hemoglobinopathies genes in the study areas.
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  • To create a database on the molecular heterogeneity as well as frequency distribution of Haemoglobinopathies for future reference and monitoring
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Future Strategies

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  • DNA data banking in the Anthropological Survey of India with respect to hemoglobinopathies, sickle Cell Anaemia and Thalassaemia among different ethnic groups in Central, East and Northeast India.
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  • Preparing a LONG-TERM counseling execution module for Thalassaemias and other hemoglobinopathies with help of government planning, NGOs, Medical resource teams, local public bodies.
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Outcome

\r\nBesides the theoretical anthropological contribution to the understanding of the evolution of abnormal genes in West Bengal populations, the population counseling and sharing of results has direct impact that can lead to prevention of the dreadful disease.\r\n\r\nThe assessment of evaluation with respect to awareness of the disease in the population conducted by the Survey Psychologists revealed (shown in the accompanying table), that the common man’s understanding of the correct knowledge is far from satisfactory.\r\n\r\nA National Conference on ‘Community Genetics Approaches of ß – Thalassaemia’ was organized in Kolkata from 7th to 9th March 2008. The main objectives of the Conference are to bring together all the scientists working on this deadly disorder to think aloud about the potential risk of this genetic anomaly afflicting some specific communities in certain pockets of the country, the need to brief up all the modules of prevention that are available in the country and to bring together the scientist and the common man/woman on the same platform to address the issues involved to make the country free of ß – Thalassaemia gene at large. The conference was inaugurated by the veteran in the field, Dr I C Verma, Senior Consultant, Sir Ganga Ram Hospital, New Delhi. Inauguration of the three day long conference was graced by the presence of Prof I P Singh, Dr P S Chouhan, Dr Dipika Mohanty, Prof D P Mukherjee, Prof A K Kalla, Dr P G Natrajan and. Dr V R Rao.\r\n\r\nCommunity perspective of all such aspects associated with the prevention of thalassaemia has been given a central attention to in all the sessions. Community interactive session – Scientist meet the community has allowed a wide scope of interaction between the community people from the rural parts of southern West Bengal and the scholars. The queries of the masses were attended to and specific problems emerging out of the execution of prevention program or mass screening were discussed with an active participation of the community people. More than 100 individuals including parents of thalassaemic children from different locations of our study area participated and made it a highly applauded and successful session. The session was immediately followed by an impressive stage play on the awareness on thalassaemia. The scientific sessions were broadly classified into seven technical sessions covering altogether 42 scientific presentations on the single theme of prevention of ß – thalassaemia. Renowned Anthropologists, Obstetricians, Haematologists, Onco-Haematologists, Paediatricians, Geneticists, Executive Members of NGOs and scholars who are actively involved in the diagnosis, genetic and social counseling also participated, contributed and shared their experiences.\r\n\r\nIn addition, an exhibition on My Health and Nation’s Progress was organized during this National Conference. The main theme of the exhibition was to highlight some of the genetic disorders like Sickle cell anaemia, Thalassaemia, and other haemoglobin abnormalities etc., their distribution and issues related to prevention through community participation.\r\n\r\n

Prevention Of ß Thalassemia

\r\n\r\nA Panel Discussion ‘A Model for Prevention of Beta- Thalassaemia and other Haemoglobinopathies in the Country’ at the end of the National Conference on Community Genetics Approaches in Prevention of Beta Thalassaemia (7th to 9th March 2008). The issues discussed include 1) The epidemiology of Beta-Thalassaemia and related genetic diseases is poorly understood in the country and health burden is most glaringly underestimated 2) Earlier population specific surveys in the country and the recent studies by the Anthropological Survey of India in rural West Bengal, have shown that the trait frequencies range 3 to 16% in communities and is more wide spread than anticipated 3) The socio-economic status of communities reveal that the prevention based on prenatal diagnosis, is most in appropriate 4) Population based screening programs are not modeled with community as basis and the school based surveillance programs with counseling are largely in effective.\r\n\r\nThe recommendations that emerged after the Panel Discussion are 1)Community based population screening with a strong inbuilt awareness program (as has been very elegantly applied in rural West Bengal by the Anthropological Survey of India) should be the preferred model for prevention of this dreadful disease in the country 2) The strategy for population screening need to have two pronged approach a) Community based Massive Screening Program: Already identified high risk communities should be immediately taken up for massive screening program with inbuilt highly professional awareness program and population Genetic Counseling b) A sample of 200 unrelated individuals from representative ethnic communities at an all India level should immediately be undertaken for screening. The priority will be in those areas where no previous work has been done 3) It is known that certain groups like Austro-Asiatics in east and north east India harbor G6PD deficiency at a higher frequencies and in those very areas malaria is also rampant and anti malarial drugs are freely distributed to populations in those areas. In such areas, the child mortality is routinely attributed to jaundice 4) The population screening (both approaches) should have a standard protocol, which is cost effective, and there should be a network of laboratories with a central advanced laboratory where DNA sequencing facility and dedicated sample storage are available 5) The panelist, after a long deliberate discussion on the issue of whether existing peripheral health system should be integrated with the program, were equivocal in emphatically recommending that ‘this should be an independent program, which is essentially considered as a time bound research program spearheaded by the Anthropological Survey of India, with the support of ICMR’. This is due to the fact that the Anthropological Survey of India has already established a net work of DNA laboratories with dedicated storage facilities in eight regions of the country; including remote areas like Port Blair and Shillong (please see the map and facilities available).\r\n\r\nProf D.P.Mukherjee and Dr. (Mrs.) Dipika Mohanty jointly chaired the Panel Discussion. Discussants were Prof I P Singh, Prof A Kalla, Prof S L Kate, Prof P S Chauhan, Dr Ajoy Sinha, Dr V R Rao, Prof S B Roy, Dr Roshan Colah and Dr B N Sarkar.\r\n\r\n\r\n\r\n\r\n

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