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Rajasthan
“Research model should ensure privacy and confidentiality of genetic information” “No scope should be left for fabrication, falsification or plagiarism” JAIPUR: The newly-established Asian Institute of Public Health is all set to evolve a public policy and ethical guidelines on bio-medical research in the country in the wake of environmental concerns, dominance of big companies in the drug market, toxicity potential and the need to protect vulnerable sections of society. Noted Jaipur-based paediatrician Ashok Gupta underlined the need to control the complex ethical, legal, social and economic implications of bio-medical research at the inauguration of the Institute in Bhubaneswar recently. The Institute will provide technical support to all States for strengthening their health systems. Dr. Ashok Gupta – convenor of the Indian Academy of Paediatrics Committee on Ethics – pointed out that there were a number of clinical, reproductive, psychological and regulatory issues involved in the fields of gene therapy, stem cell research and vaccine development. Pre-natal diagnosis, genetic engineering, transplantation, in-vitro fertilisation, pre-implantation diagnosis, embryo manipulation, pharmaco-genetics and cloning are some other areas in which a “ruthless pursuit” of research would enhance risks, violate privacy and promote health inequities, he added. The Institute, established in Orissa in partnership with the University of Maryland, Baltimore, US, proposes to undertake evidence-based research to shape health policies and develop sustainable health care delivery models besides designing and monitoring national programmes on research and training. The first of its kind in the country, the Institute is home to multiple centres of excellence in occupational and environmental health, elderly and women’s health, clinical investigations, public policy and emerging diseases. Dr. Gupta, who was invited to the Institute to assist in formulating an ethical module for clinical researchers, said the main objective of bio-medical ethics was to prevent harm, protect bio-diversity, control damage to food quality and nutrition, stop genetic pollution and address socio-economic concerns. He affirmed that any research model should ensure privacy and confidentiality of genetic information, obtain informed consent of the individuals concerned for reproductive decision-making and take into account social risks, limitations and quality control. While health and environmental issues are equally important for genetically modified food and microbes, the research should refrain from commercialisation of copyrights, data and patents, said Dr. Gupta, adding that there were several uncertainties in the gene tests for susceptibilities and multi-factorial conditions. Dr. Gupta – presently on the faculty of Sawai Man Singh Medical College here – said all possibilities of misuse of technology for pre-implantation genetic diagnosis and treatment should be examined and guidelines formulated for stem cell research and cord blood bank. “No scope should be left for fabrication, falsification, plagiarism or other practices that seriously deviate from the established norms,” he said.
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