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Journal of Autism and Developmental Disorders

, Volume 43, Issue 9, pp 2002–2014 | Cite as

Ethical Considerations in Conducting Research on Autism Spectrum Disorders in Low and Middle Income Countries

  • Tamara C. Daley
  • Nidhi Singhal
  • Vibha Krishnamurthy
Original Paper

Abstract

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.

Keywords

Autism spectrum disorder Ethics Cross-cultural ELSI LMIC LAMI Global India 

Notes

Acknowledgments

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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Copyright information

© Springer Science+Business Media New York 2012

Authors and Affiliations

  • Tamara C. Daley
    • 1
  • Nidhi Singhal
    • 2
  • Vibha Krishnamurthy
    • 3
  1. 1.WestatDurhamUSA
  2. 2.Action For Autism National Centre for AutismNew DelhiIndia
  3. 3.Ummeed Child Development CenterMumbaiIndia

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