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J Autism Dev Disord (2013) 43:20022014 DOI 10.1007/s10803-012-1750-2
ORIGINAL PAPER
Ethical Considerations in Conducting Research on Autism Spectrum Disorders in Low and Middle Income Countries
Tamara C. Daley Nidhi Singhal
Vibha Krishnamurthy
Published online: 3 January 2013 Springer Science+Business Media New York 2012
Abstract Autism spectrum disorder (ASD) is being identied 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 specic considerations in conducting epidemiological, genetic and treatment studies as well as general principles from the eld 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.
Keywords Autism spectrum disorder Ethics
Cross-cultural ELSI LMIC LAMI Global India
Given the rapid spread of awareness about autism spectrum disorder (ASD) around the world, the condition is being identied, and research on ASD is being conducted, in an ever-increasing number of countries classied as low or middle income (LMIC).1 Seventy-ve of approximately
120 countries in which an ASD-specic organization has been established are low or middle income (see Fig. 1). In 2011 alone, studies were published from countries as diverse as Brazil (Paula et al. 2011); China (Chan et al. 2011; Wang et al. 2012); Colombia (Talero-Gutirrez et al. 2011); Croatia (Benjak et al. 2011); Egypt (El-baz et al. 2011a, b); India (Kishore and Basu 2011; Srivastava and Mukhopadhyay 2011); Iran (Samadi and McConkey 2011; Samadi et al. 2011); Libya (Zeglam and Maouna 2011); Nepal (Kharti et al. 2011); Nigeria (Igwe et al. 2011); Oman (Al-Farsi et al. 2011; Ali et al. 2011); and Pakistan (Rahbar et al. 2011). Moreover, there is now a dedicated source of funding for research on ASD in low and middle income countries through the Autism Speaks GAPH initiative (Paula et al. 2011a).
This growth of autism awareness and research globally is encouraging. As discussed in previous arguments for greater examination of ASD in a cultural context (e.g., Daley 2002; Bernier et...