Ethical Considerations in Conducting Research on Autism Spectrum Disorders in Low and Middle Income Countries
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Autism spectrum disorder (ASD) is being identified in an ever-increasing number of countries, including many that are low or middle income (LMIC). Research conducted in these countries requires awareness of unique ethical issues. Drawing on the experience of two organizations that have been involved in conducting and collaborating in ASD research in India, we describe specific considerations in conducting epidemiological, genetic and treatment studies as well as general principles from the field of multinational clinical research as they apply to the conduct of ASD research. We argue that greater attention to ethical concerns will result in quality studies conducted in LMICs that are also of greatest relevance for families and children with ASD.
KeywordsAutism spectrum disorder Ethics Cross-cultural ELSI LMIC LAMI Global India
We are grateful for the comments and suggestions provided by Merry Barua and Tom Weisner. We especially appreciate and acknowledge valuable contributions toward this paper by Ilina Singh. A draft of this paper was presented at the 11th Annual International Meeting for Autism Research, May 2012, Toronto.
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