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Journal of Autism and Developmental Disorders
Gepubliceerd in:

01-09-2013 | Original Paper

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

Auteurs: Tamara C. Daley, Nidhi Singhal, Vibha Krishnamurthy

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 9/2013

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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.
vorige artikel Children with Autism in the People’s Republic of China: Diagnosis, Legal Issues, and Educational Services
volgende artikel Acquisition of Multiple Questions in the Context of Social Conversation in Children with Autism
Voetnoten
1
The terms low and middle income country are terms used by the World Bank to refer to countries with a Gross National Income (GNI) per capita of US $12,275 or less.
 
2
In this paper, we use NGOs to refer to entities that are self-governing, private, and not-for-profit (Vakil 1997), which includes both organizations and schools.
 
Literatuur
Ahmad, K. (2003). Developing countries need effective ethics review committees. The Lancet, 362 627.CrossRef
Al-Farsi, Y. M., Al-Sharbati, M. M., Al-Farsi, O. A., Al-Shafaee, M. S., Brooks, D. R., & Waly, M. I. (2011). Brief report: Prevalence of autistic spectrum disorders in the sultanate of Oman. Journal of Autism and Developmental Disorders, 41, 821–825.PubMedCrossRef
Ali, A., Waly, M. I., Al-Farsi, Y. Y., Essa, M. M., Al-Sharbati, M. M., & Deth, R. C. (2011). Hyperhomocysteinemia among Omani autistic children: A case-control study. Acta Biochimica Polonica, 58(4), 547–551.PubMed
Appelbaum, P. S., Roth, L. H., Lidz, C. W., Benson, P., & Winslade, W. (1987). False hopes and best data: Consent to research and therapeutic misconception. The Hastings Center Report, 17, 20–24.PubMedCrossRef
Belmont Report. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Retrieved February 24, 2011, from hhs.gov/ohrp/humansubjects/guidance/belmont.html.
Benatar, S. R. (2002). Reflections and recommendations on research ethics in developing countries. Social Science and Medicine, 54, 1131–1141.PubMedCrossRef
Benatar and Fleisher. (2007). Ethical issues in research in low-income countries. The International Journal of Tuberculosis and Lung Disease, 11(6), 617–623.
Bernard-Opitz, V. B., Kwook, K. W., & Sapaun, S. (2001). Epidemiology of autism in Singapore: Findings of the first autism survey. International Journal of Rehabilitation Research, 24, 1–6.PubMedCrossRef
Bernier, R., Mao, A., & Yen, J. (2010). Psychopathology, families, and culture: Autism. Child and Adolescent Psychiatric Clinics of North America, 19(4), 855–867.PubMedCrossRef
Black, R. E., Allen, L. H., Bhutta, Z. A., Caulfied, L. E., de Onis, M., Ezzati, M., et al. (2008). Maternal and child undernutrition: Global and regional exposures and health consequences. Lancet, 371(9608), 243–260.PubMedCrossRef
Caballero, B. (2002). Ethical issues for collaborative research in developing countries. American Journal of Clinical Nutrition, 76, 717–720.PubMed
Chan, R. C. K., Hu, Z., Cui, J., Wang, Y., & McAlonan, G. M. (2011). Social attribution in children with high functioning autism and Asperger syndrome: An exploratory study in the Chinese setting. Research in Autism Spectrum Disorders, 5, 1538–1548.CrossRef
Cho, M. (2011). Overview of ELSI. Paper presented at the NIH Workshop on Ethical, Legal and Social Implications of Autism Research. Bethesda, MD.
Council for International Organizations of Medical Sciences (CIOMS). (2002). International ethical guidelines for biomedical research involving human subjects. Geneva: CIOMS.
Cox, D. J. (2012). From interdisciplinary to integrated care of the child with autism: The essential role for a code of ethics. Journal of Autism and Developmental Disorders, 42(12), 2729–2738.PubMedCrossRef
Daley, T. C. (2002). The need for cross-cultural research on the pervasive developmental disorders. Transcultural Psychiatry, 39(4), 531–550.
Daley, T. C., Singhal, N., & Barua, M. (2012). Autism spectrum disorders in India: A comprehensive review of the literature. Paper presented at the International Meeting for Autism Research, Toronto, Canada.
Desousa, A. (2010). An open-label trial of Risperidone and Fluoxetine in children with autistic disorder. Indian Journal of Psychological Medicine, 32(1), 17–21.
de Melo-Martin, I., & Ho, A. (2008). Beyond informed consent: The therapeutic misconception and trust. Journal of Medical Ethics, 34, 202–205.PubMedCrossRef
de Vries, J., Bull, S. J., Doumbo, O., Ibrahim, M., Mercereau-Puijalon, O., & Kwiatkowski, D. (2011). Ethical issues in human genomics research in developing countries. BMC Medical Ethics, 12(5). doi:10.​1186/​1472-6939-12-5.
Durkin, M. S. (2002). The epidemiology of developmental disabilities in low income countries. Mental Retardation and Developmental Disabilities Research Review, 8, 206–211.CrossRef
Edwardraj, S., Mumtaj, K., Prasad, J. H., Kuruvilla, A., & Jacob, K. S. (2010). Perceptions about intellectual disability: A qualitative study from Vellore, South India. Journal of Intellectual Disability Research, 54, 736–748.PubMedCrossRef
El-baz, F., Elhossiny, R. M., Elsayed, A. B., & Gaber, G. M. (2011a). Hair mercury measurement in Egyptian autistic children. The Egyptian Journal of Medical Human Genetics, 11, 135–141.CrossRef
El-Baz, F., Ismael, N. A., & El-Din, S. M. (2011b). Risk factors for autism: An Egyptian study. The Egyptian Journal of Medical Human Genetics, 12, 31–38.CrossRef
Emanuel, E. J., Wendler, D., Killen, J., & Grady, C. (2004). What makes clinical research in developing countries ethical? Journal of Infectious Diseases, 189, 932–937.CrossRef
Ertem, I. O., Atay, G., Dogan, D. G., Bayhan, A., Bingoler, B. E., & Gok, C. G. (2007). Mothers’ knowledge of young child development in a developing country. Child: Care, Health and Development, 33(6), 728–737.CrossRef
Ertem, I. O., Dogan, D. G., Gok, C. G., Kizilates, S. U., Caliskan, A., Atay, G., et al. (2008). A guide for monitoring child development in low and middle-income countries. Pediatrics, 121(3), e581–e589.PubMedCrossRef
Feinstein, A. (2010). A history of autism: Conversations with the pioneers. Chichester, UK: Wiley-Blackwell.CrossRef
Fombonne, E., Marcin, C., Bruno, R., Tinoco, C. M., & Marquez, C. D. (2012). Screening for autism in Mexico. Autism Research, 5, 180–189.PubMedCrossRef
Georgas, J., Berry, J. W., van de Vijver, F. J. R., Kagitçibasi, C., & Poortinga, Y. H. (2006). Families across cultures: A 30-nation psychological study. Cambridge: Cambridge University Press.CrossRef
Ghai, A. (2001). Marginalisation and disability: Experience from the third world. In M. Priestly (Ed.), Disability and the life course: Global perspectives (pp. 26–37). Cambridge: Cambridge University Press.CrossRef
Gottlieb, C. A., Maenner, M. J., Cappa, C., & Durkin, M. S. (2009). Child disability screening, nutrition, and early learning in 18 low and middle income countries: Data from UNICEF’s Multiple Indicator Cluster Survey—Round 3 (2005–2006). Lancet, 374(9704), 1831–1839.PubMedCrossRef
Grinker, R. R. (2007). Unstrange minds: Remapping the world of autism. New York: Basic Books.
Grinker, R. R., Yeargin-Allsopp, M., & Boyle, C. (2011). Culture and autism spectrum disorders: The impact on prevalence and recognition. In D. G. Amaral, G. Dawson, & D. H. Geschwind (Eds.), Autism spectrum disorders (pp. 112–136). New York: Oxford University Press.CrossRef
Hastings, R. P., Robertson, J., & Yasamy, M. T. (2012). Interventions for children with pervasive developmental disorders in low and middle income countries. Journal of Applied Research in Intellectual Disabilities, 25(2), 119–134.PubMedCrossRef
Hoop, J. G., Smyth, A. C., & Roberts, L. W. (2008). Ethical issues in psychiatric research on children and adolescents. Child and Adolescent Psychiatric Clinics of North America, 17, 127–148.PubMedCrossRef
Igwe, M. N., Ahanotu, A. C., Bakare, M. O., Achor, J. U., & Igwe, C. (2011). Assessment of knowledge about childhood autism among paediatric and psychiatric nurses in Ebonyi state, Nigeria. Child & Adolescent Psychiatry & Mental Health, 5, 1–8.CrossRef
Indian Council of Medical Research. (2006). Ethical guidelines for biomedical research on human subjects. New Delhi: ICMR.
Jha, M. M. (2010). From special to inclusive education in India: Case studies of three schools in New Delhi. New Delhi: Dorling Kindersley.
Kalyanpur, M., & Gowramma, I. P. (2007). Cultural barriers to South Indian families’ access to services and educational goals for their children with disabilities. The Journal of the International Association of Special Education, 8(1), 69–82.
Kass, N., & Hyder, A. (2001). Attitudes and experiences of US and developing country investigators regarding US human subjects regulations. In Ethical and policy issues in international research: Clinical trials in developing countries, Vol I, II. Bethesda, MD: National Bioethics Advisory Commission; B-1-220.
Khandelwal, S., Avode, G., Baingana, F., Conde, B., Cruz, M., Deva, P., et al. (2010). Mental and neurological health research priorities setting in developing countries. Social Psychiatry and Psychiatric Epidemiology, 45(4), 487–495.PubMedCrossRef
Kharti, G. K., Onta, S. R., Suresh, T., & Choulagai, B. P. (2011). Knowledge and management practices of paediatricians about autism spectrum disorder in Kathmandu, Nepal. Journal of the Nepal Paediatric Society, 31(2), 98–104.
Kim, Y. S., Leventhal, B. L., Koh, Y. J., Fombonne, E., Laska, E., Lim, E., et al. (2011). Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry, 168, 904–912.PubMedCrossRef
Kishore, M. T., & Basu, A. (2011). Early concerns of mothers of children later diagnosed with autism: Implications for early identification. Research in Autism Spectrum Disorders, 5(1), 157–163.CrossRef
Krishnamurthy, V. (2008). A clinical experience of autism in India. Journal of Developmental and Behavioral Pediatrics, 29(4), 331–333.PubMedCrossRef
Lotter, V. (1978). Childhood autism in Africa. Journal of Child Psychology and Psychiatry, 19(3), 231–244.PubMedCrossRef
Mackenzie, C., McDowell, C., & Pittaway, E. (2007). Beyond ‘do no harm’: The challenge of constructing ethical relationships in refugee research. Journal of Refugee Studies, 20(2), 299–319.CrossRef
Macklin, R., & McCall-Smith, A. (2004). Double standards in medical research in developing countries. Cambridge: Cambridge University Press.CrossRef
Mandava, A., Pace, C., Campbell, B. Emanuel, E., & Grady, C. (2012). The quality of informed consent: Mapping the landscape. A review of empirical data from developing and developed countries. Journal of Medical Ethics. Online First.
Marchant, G. E., & Robert, J. S. (2009). Genetic testing for autism predisposition: Ethical, legal and social challenges. Houston Journal of Health Law & Policy, 9, 203–235.
Marshall, P. A. (2007). Ethical challenges in study design and informed consent for health research in resource-poor settings. Geneva: World Health Organization.
Marshall, P. A., Adebamowo, C. A., Adeyemo, A. A., Ogundiran, T. O., Vekich, M., et al. (2006). Voluntary participation and informed consent to international genetic research. American Journal of Public Health, 96(11), 1989–1995.PubMedCrossRef
Mathur, R. (2010). Developing an ethical framework for health research in India. Forum for Ethical Review Committees in Asia and the Western Pacific, July.
Maulik, P. K., & Darmstadt, G. L. (2007). Childhood disability in low- and middle-income countries: Overview of screening, prevention, services, legislation, and epidemiology. Pediatrics, 120, S1–S55.PubMedCrossRef
McKenzie, K., & Megson, P. (2012). Screening for intellectual disability in children: A review of the literature. Journal of Applied Research in Intellectual Disabilities, 25, 80–87.PubMedCrossRef
McMahon, W. M., Baty, J. B., & Botkin, J. (2006). Genetic counseling and ethical issues for autism. American Journal of Medical Genetics Part C, 142C, 52–57.CrossRef
Mehrotra, N., & Vaidya, S. (2008). Exploring constructs of intellectual disability and personhood in Haryana and Delhi. Indian Journal of Gender Studies, 15(2), 317–340.CrossRef
Minkler, M. (2005). Community-based research partnerships: Challenges and opportunities. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 82(2), ii3–ii12.
Montiel-Nava, C., & Peña, J. A. (2008). Epidemiological findings of pervasive developmental disorders in a Venezuelan study. Autism, 12(2), 191–202.PubMedCrossRef
Msall, M. E., & Hogan, D. P. (2007). Counting children with disability in low-income countries: Enhancing well-being, promoting child development, and investing in economic well-being. Pediatrics, 120, 182–185.PubMedCrossRef
Nazni, P., Weseley, E. G., & Nishadevi, V. (2008). Impact of casein and gluten free dietary intervention on selected autistic children. Iranian Journal of Pediatrics, 18(3), 244–250.
Nizar, S. (2011). Impact of UNCRPD on the status of persons with disabilities. Indian Journal of Medical Ethics, 8(4), 223–229.PubMed
Olweny, C. (1994). The ethics and conduct of cross-cultural research in developing countries. Psycho-oncology, 3, 11–20.CrossRef
Paula, C. S., Fombonne, E., Gadia, C., Tuchman, R., & Rosanoff, M. (2011a). Autism in Brazil—perspectives from science and society. Review Association Medico Brasil, 57(1), 2–5.
Paula, C. S., Ribeiro, S. H., Fombonne, E., & Mercadant, M. T. (2011b). Brief report: Prevalence of pervasive developmental disorder in Brazil: A pilot study. Journal of Autism and Developmental Disorders, 41(12), 1738–1742.PubMedCrossRef
Pellicano, E., & Stears, M. (2011). Bridging autism, science and society: Moving toward an ethically informed approach to autism research. Autism Research, 4, 271–282.PubMedCrossRef
Perera, H., Wijewardena, K., & Aluthwelage, R. (2009). Screening of 18–24-month-old children for autism in a semi-urban community in Sri Lanka. Journal of Tropical Pediatrics, 55(6), 402–405.PubMedCrossRef
Rahbar, M. H., Ibrahim, K., & Assassi, P. (2011). Knowledge and attitude of general practitioners regarding autism in Karachi, Pakistan. Journal of Autism and Developmental Disorders, 41, 465–474.PubMedCrossRef
Rice, C. E., Baio, J., Van Naarden Braun, K., Doernberg, N., Meany, F. J., & Kirby, R. S. (2007). A public health collaboration for the surveillance of autism spectrum disorders. Paediatric and Perinatal Epidemiology, 21, 179–190.PubMedCrossRef
Samadi, S., Mahmoodizadeh, A., & McConkey, R. (2011). A national study of the prevalence of autism among five-year-old children in Iran. Autism, 16(1), 5–14.PubMedCrossRef
Samadi, S., & McConkey, R. (2011). Autism in developing countries: Lessons from Iran. Autism Research and Treatment. Article ID:145359.
Samiran Nundy, M. C., & Gulhati, C. M. (2005). A new colonialism? Conducting clinical trials in India. New England Journal of Medicine, 352(16), 1633–1636.PubMedCrossRef
Schulz-Baldes, A., Vayena, E., & Biller-Adorno, N. (2007). Sharing benefits in international health research: Research-capacity building as an example of an indirect collective benefit. EMBO Reports, 8(1), 8–13.PubMedCrossRef
Selkirk, C. G., Veach, P. M., Lian, F., Schimmenti, L., & LeRoy, B. S. (2009). Parents’ perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: Recommendations for genetic counselors. Journal of Genetic Counseling, 18, 507–519.PubMedCrossRef
Sen, A. (2009). The idea of justice. London: Penguin.
Singh, J., Illes, J., Lazzeroni, L., & Hallmayer, J. (2009). Trends in US autism research funding. Journal of Autism and Developmental Disorders, 39, 788–795.
Singhal, N. (2010). The impact of the popular media on awareness: Aap Ki Antara. Paper presented at the International Meeting for Autism Research, Philadelphia, PA.
Smith, L. T. (1992). Te raapunga I te ao maarama (The search for the world of light). In M. K. Hohepa & G. H. Smith (Eds.), The issue of research and Maori: Monograph # 9 (pp. 1–12). Auckland: Research Unit for Maori Education, University of Auckland.
Somaiah, M. (2009). Inclusive education—dismal future. Indian Educational Review, 45(1), 43–55.
Sonnander, K. (2000). Early identification of children with developmental disabilities. Acta Paediatrica. Supplement, 434, 17–23.CrossRef
Srivastava, S., & Mukhopadhyay, A. (2011). Optimism-pessimism and emotional competence measures of parents of children with symptoms of autism. Indian Journal of Community Psychology, 7(1), 130–138.
Tabor, H. K., Berkman, B. E., Hull, S. C., & Bamshad, M. J. (2011). Genomics really gets personal: How exome and whole genome sequencing challenge the ethical framework of human genetics research. American Journal of Medical Genetics Part A, 155, 2916–2924.CrossRef
Talero-Gutiérrez, C., Rodríguez, M., De La Rosa, D., Morales, G., & Vélez-Van-Meerbeke, A. (2011). Profile of children and adolescents with autism spectrum disorders in an institution in Bogota, Colombia. Neurologia [Epub ahead of print].
Tharyan, P., & Ghersi, G. (2008). Registering clinical trials in India: A scientific and ethical imperative. The National Medical Journal of India, 21(1), 31–34.PubMed
UNICEF. (2003). Examples of inclusive education: India. Kathmandu: The United Nations Children’s Fund (UNICEF) Regional Office for South Asia.
Vaidya, S. (2006). Parent as researcher: A personal narrative. Autism Network, 1(3), 2–4.
Vakil, A. C. (1997). Confronting the classification problem: Toward a taxonomy of NGOs. World Development, 25(12), 2057–2070.CrossRef
Vitiello, B., Aman, M. G., Scahill, L., McCracken, J. T., McDougle, C. J., Tierney, E., et al. (2005). Research knowledge among parents of children participating in a randomized clinical trial. Journal of the American Academy of Child and Adolescent Psychiatry, 44(2), 145–149.PubMedCrossRef
Vitiello, B., Jensen, P., & Hoagwood, K. (1999). Integrating science and ethics in child and adolescent psychiatry research. Biological Psychiatry, 46, 1044–1049.PubMedCrossRef
Walsh, P., Elsabbagh, M., Bolton, P., & Singh, I. (2011). In search of biomarkers for autism: Scientific, social and ethical challenges. Nature Reviews Neuroscience, 12, 603–612.PubMedCrossRef
Waltz, M. (2007). The relationship of ethics to quality: The particular case of research in autism. International Journal of Research and Method in Education, 30(3), 353–361.CrossRef
Wang, J., Zhou, X., Xia, W., Sun, C., Wu, L. & Wang, J. (2012). Autism awareness and attitudes towards treatment in caregivers of children aged 3–6 years in Harbin, China. Social Psychiatry and Psychiatric Epidemiology, 47(8), 1301–1308.
Wirz, S., Edwards, K., Flower, J., & Yousafzai, A. (2005). Field testing of the ACCESS materials: A portfolio of materials to assist health workers to identify children with disabilities and offer simple advice to mothers. International Journal of Rehabilitation Research, 28(4), 293–302.PubMedCrossRef
Wong, V. C. N., & Hui, S. L. H. (2008). Epidemiological study of autism spectrum disorder in China. Journal of Child Neurology, 23(1), 67–72.PubMedCrossRef
World Medical Association. (2008). Declaration of Helsinki: Ethical principles for medical research involving human subjects. Sixth Revision.
Yasamy, M. T., Maulik, P. K., Tomlinson, M., Lund, C., Van Ommeren, M., & Saxena, S. (2011). Responsible governance for mental health research in low resource countries. PLoS Med, 8(11), e1001126.PubMedCrossRef
Zeglam, A. M., & Maouna, A. (2011). Is there a need for a focused health care service for children with autistic spectrum disorders? A keyhole look at this problem in Tripoli, Libya. Autism. Published online 14 September 2011.
Metagegevens
Titel
Ethical Considerations in Conducting Research on Autism Spectrum Disorders in Low and Middle Income Countries
Auteurs
Tamara C. Daley
Nidhi Singhal
Vibha Krishnamurthy
Publicatiedatum
01-09-2013
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 9/2013
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-012-1750-2

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