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

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.

Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study

“…Research on parents of children with ASD has largely been limited to families in Western or developed countries (Daley, 2002;Freeth et al, 2014), but more recently, researchers have highlighted the importance of cross-cultural research (e.g., Daley et al, 2013;Norbury & Sparks, 2013). Given the limited ASD research in South-East Asia and in particular Malaysia, researchers have noted that there is a tremendous need for more investigation (e.g., Clark et al, 2012;Golden & Liaw, 2015;Ilias, Ponnusamy, & Normah, 2008;Neik et al, 2014).…”

“…The researchers developed collaborative partnerships (e.g., see Daley et al, 2013) with ASDrelated organisations by initiating contact with centre administrators (e.g., The National Autism Society of Malaysia) via email and phone. Several organisations responded and provided written permission, agreeing to post advertisements.…”

“…In future research, examination of sociodemographic factors shaping family experiences is recommended to be studied more closely (e.g., Hidalgo, McIntyre, & McWhirter, 2015), with care to follow the highest ethical principles, especially in developing and low-to-middle income countries (e.g., Daley et al, 2013). Future research is suggested to consider the dynamic impact of intrapersonal and interpersonal processes and the differing roles these supports may play in more traditional and developing countries.…”

“…Problematically, however, limited research has examined ASD within developing, low-to-middle income, and non-Western countries (Daley, Singhal, & Krishnamurthy, 2013;Freeth, Milne, Sheppard, & Ramachandran, 2014). In Malaysia, a developing, middleincome country with a multi-ethnic population comprised of three ethnicities as well as indigenous tribes, very limited awareness and support resources for raising a child with ASD are available (Clark, Brown, & Karrapaya, 2012;Neik, Lee, Low, Chia, & Chua, 2014;Toran, 2011).…”

The ethics of complexity. Genetics and autism, a literature review

“…In empirical research by Tabor and Cho [2007], parents quoted the hope that return of genetic results would lead to some direct [Daley et al, 2013;Gershon and AllieyRodriguez, 2013]. Other negative consequences of the feedback of return of result are the psychological impact of genetic results, including blame, guilt and fault, worry, stress, fear, and depression.…”