Challenges in Implementing the Ethical Norms in Research on Autistic Children in the Indian Context

Human subjects are used in numerous research experiments, clinical or non clinical, which involves collection of data from them and later, analysis of data. The participants are exposed to primary risk of the research when the researcher attempts to collect, use and apply information accessed from the participants. This makes ethics in research a very vital subject while conducting research in human subjects. Research with children adds more dimensions to ethical norms where permission from parents / guardians are also required. Further, the magnitude of this vulnerability intensifies while research is conducted on children with special needs and protecting their rights and welfare become imperative. This paper looks into the issues on conducting research on autistic children. The intermingling of ethical principles, participants rights, research goals, socio-cultural context and working with very vulnerable special population brings out crucial issues for the researcher on implementing the ethical goals, which are discussed in the present study. This paper aims at identifying the challenges in implementing the ethical norms in research on autistic children in observation based studies in the Indian context. The participants are extremely vulnerable children with special needs. The objective of the paper is also to highlight the Indian socio-cultural environment which plays a critical role in research on human subjects. Finally, the paper arrives at tentative recommendations on how to treat autistic children as research participants and suggests appropriate modifications of current guidelines, wherever required, so that ethical norms are widely understood and adhered to. The need for awareness about ethical norms in research on human subject is stressed on. The present paper is based on case studies on 42 autistic children to develop diagnostics and therapeutic test batteries for the autistic children as reference. The challenges in implementing ethical norms while conducting research studies on these children are underlined. To discuss these vital issues, the study looks into the guidelines issued by the World Medical Association (WMA), the Council for International Organizations of Medical Sciences (in association with World Health Organization WHO), the Indian Council of Medical Research (ICMR) and National Committee for Ethics in Social Science Research in Health (NCESSRH). The paper identified the challenges in the Indian context so that ethic norms are widely adhered to. Appropriate suggestions suitable for children with developmental disorder based on Indian context have been made. A research work on autism should contribute towards the welfare of the autistics and just treatment of participants in research calls for special attention