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Disparities in Canadian Indigenous Health Research on Neurodevelopmental Disorders

Di Pietro, Nina C. PhD*,†; Illes, Judy PhD, FRSC, FCHAS*,†

Journal of Developmental & Behavioral Pediatrics: January 2014 - Volume 35 - Issue 1 - p 74–81
doi: 10.1097/DBP.0000000000000002
Review Article

Objective: To map the landscape of research on autism (ASD), cerebral palsy (CP), and fetal alcohol spectrum disorder (FASD) in Canadian Aboriginal children.

Method: The authors used a detailed search strategy to identify and access publications on ASD, CP, and FASD involving Canadian Aboriginal children, families, and communities from online databases. They analyzed these materials for the type of research, stated objectives, methodologies, and the level of engagement of Aboriginal Peoples.

Results: The authors found a total of 52 reports published since 1981 relevant to Aboriginal children. Of these, 51 focused exclusively on FASD. They also found a near-complete failure to acknowledge community involvement in research decisions or dissemination of results in any of the publications.

Conclusions: The focus on FASD in Aboriginal children and the absence of research on the other 2 major childhood disorders are at odds with rates of these disorders across Canadian children. The authors argue that this trend violates fundamental principles ensuring equitable representation of all children regardless of background in research and access to benefits of research in health care and perpetuates stigma in an already marginalized population.

This article has supplementary material on the web site: www.jdbp.org.

*National Core for Neuroethics, Division of Neurology, Faculty of Medicine; and

NeuroDevNet, Inc., University of British Columbia, Vancouver, Canada.

Address for reprints: Judy Illes, PhD, FRSC, FCHAS, National Core for Neuroethics Koerner Pavilion, University of British Columbia Hospital, 2211 Wesbrook Mall, Vancouver, Canada V6T 2B5; e-mail: jilles@mail.ubc.ca.

Supported by NeuroDevNet, Inc., a network of Canada's Networks of Centres of Excellence (NCE). J.I. is Canada Research Chair in Neuroethics. Support for this work also generously enabled by CIHR CNE #85117, the British Columbia Knowledge Development Fund, and the Canadian Foundation for Innovation (J.I.).

Disclosure: The authors declare no conflict of interest.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions this article on the journal’s Web site (www.jdbp.org).

Received September , 2013

Accepted September , 2013

© 2014 by Lippincott Williams & Wilkins