Research Area : Health Legislation and Patients' Rights
Self-regulation and ethics have been issues for debate within research more often in medicine than in social sciences. This is, at least partly because historically ethics has been used as a defining principle for medicine. In recent years, there has been a growing concern for ethics in medical research in India. Many socially conscious groups (such as women’s groups, health activists’ groups) have brought into public focus, the unethical conduct of medical research, particularly with reference to contraceptive research on women. These issues have also attracted media attention. In 1980, the Indian Council of Medical Research (ICMR) adopted its first code of ethics, and it is currently undergoing revision.A consultative document was published in 1997 but the new guidelines are yet to be formally released.
In the social sciences, however, interest in ethics is only now emerging.Although many social scientists have paid serious attention to the appropriate conduct of research and have set personal examples, such important issues are hardly discussed as ethics and little effort has been made to formalise a code of conduct for researchers. Neither the national councils for social sciences (the ICSSR, etc), their institutions, nor the national bodies for higher education such as the UGC have published comprehensive guidelines for research in social sciences. In other countries, particularly in the developed countries, however, in last three decades various disciplines of social sciences have adopted comprehensive codes of ethics. Besides, in the last one and half decades, there has been growing realisation that in all sciences, the need to protect participants and to preserve the autonomy of researchers is fundamentally similar. As a consequence, some countries have made efforts to evolve common ethical guidelines by medical, social science and natural science disciplines. For instance, the Research Councils for Medical, Natural Sciences and Engineering, and Social Sciences and Humanities (jointly called Tri-Council) in Canada adopted a common code of ethics, titled, “The Code of Ethical Conduct for Research Involving Humans), in 1997.
In this context CEHAT decided to make an organised effort to draft and popularise ethical guidelines for research in social sciences, and to promote appropriate institutional mechanism for their implementation. An exhaustive survey and analysis of various national and professional codes of ethics for research was carried out and Indian literature reviewed to understand the ethical concerns shown by the researchers. In the later part of the project, in 1999, a multi-disciplinary committee of scholars and experts was formed to draft the guidelines. While the project team of CEHAT constituted the secretariat, the committee has the following ten persons: (1) Ghanshyam Shah (Sociology, JNU, New Delhi). (2) Lakshmi Lingam (Sociology and Women’s Studies, TISS, Mumbai). (3) V R Muraleedharan (Economics, IIT, Chennai). (4) Padma Prakash (Sociology and Journalism, EPW, Mumbai). (5) Thelma Narayan (Public Health, CHC, Bangalore). (6) Ashok Dayalchand (Community Health, Pachod, Maharashtra). (7) Manisha Gupte (Women and Health activist, MASUM, Pune). (8) Sarojini Thakur (Add. Secretary, Ministry of Women and Child Development, New Delhi), (9) Geetanjali Misra (The Ford Foundation, New Delhi). (10) Radhika Chandiramani (Psychology, TARSHI, New Delhi).
The draft guidelines have been published in the March 18, 2000 issue of the Economic and Political Weekly for promoting discussion among the social science community in India. CEHAT has also presented these guidelines to the scholars of six institutions across the country and has solicited feed back from over one hundred institutions and scholars.The group formulated the guidelines for discussion and after national level consultation, including a national meeting of experts in May 2000, the revised and final draft of the guidelines was adopted and published by CEHAT in November 2000 under the title "Ethical Guidelines for Social Science Research in Health.The guidelines were widely distributed in India and internationally.
Supported by: The Ford Foundation, New Delhi Research Team :Amar Jesani and Tejal Barai