This is a project under the broad framework of SMAP (Socio-genetic Marginalization in Asia Programme). SMAP traces the links between social marginalization and genetic knowledge in the study of vulnerable minorities, health care and population policies, which leads to following research problems: First, the lack of universal regulation for genetic sampling by international companies and universities leads to disputable research practices among vulnerable populations; second, bioethical differences between health care systems are expressed in the different meanings allocated to concepts, such as informed concept, health, environmental ethics, and family values; and third, the development priorities and practices of genetic screening and testing for congenital diseases in different nation states have various consequences for the livelihood and identities of diverging social groupings. A central question of SMAP is, therefore, what are the health care needs and interests of different socio-genetic population groups with regards to genetic sampling and genetic testing, and how are they reflected in health care policies?
In this back drop, it is understood that many small-scale tribal and caste population groups have been the target of genetic research in India for long time. With the advancement in new genetic technologies and the Human Genome Project, the earlier genetic data collected from these groups and the ongoing research (e.g. the Indian Genome Variation database Project) will have critical social, economic, political and ethical implications for the communities in particular and for the health care policies in general. The aims and objectives of the present research is to understand (i) the socio-economic and cultural conditions of genetic sampling, screening and data banking on these isolated small-scale population groups (ii) the motives in design and conduct of such research, their processes and consequences, and possible commodification of genetic data by various interest groups such as academic researchers, pharmaceutical companies, state agencies and NGOs (iii) and to test the effectiveness of national and international bio-ethical protocols in the socio-cultural context of selected communities at local level. Eventually this study will have a comparative assessment of the findings with Japan and China within the SMAP programme.
This research focuses on two target groups; first, the "communities"- who contribute genetic information as ‘research subjects' which is crucial for research and second, the "Institutions"- that are engaged in collection, storage and manipulation of such data for research and commercial usage. Hence, primary data will be collected using anthropological research techniques from randomly selected ‘Primitive Tribal Groups', Schedule Tribes and Caste groups from various regions of India based on their level of socio-economic condition and sensitization to genetic disorder; e.g. sickle cell anaemia. Also data will be collected from various research institutes and universities engaged in genetic epidemiological research and genomic studies.