Ethical Considerations in Conducting ASD Research in Low and Middle Income Countries

The gaps about what is known about Autism Spectrum Disorder in low and middle income countries present clear opportunities for a variety of different types of research, including epidemiological, treatment, genetic, and psychometric studies.  However, such research also requires careful attention to specific ethical issues beyond what is typically followed in conducting studies on ASD. This is particularly true in situations where the researcher is not from the country in which the study is being conducted.  In the broader field of multinational clinical research, a number of ethical principles have been articulated (e.g. Emanuel, Wendler, Killen & Grady, 2004) that are relevant when conducting ASD research in low and middle income countries. These principles include the importance of establishing collaborative partnerships, setting research priorities, respect for participants and the study community, fair selection of study population, favorable risk-benefit ratio, independent review, and informed consent.  This presentation draws from a number of studies that have been conducted in India to describe areas of ASD research that may require particular attention when examined in a low or middle income country, or in a country where research on ASD is not yet well established. Through consideration of these areas, we suggest that research on ASD in low and middle income countries will more effectively examine and promote the issues of greatest significance for families, individuals with ASD, and local researchers.