Ethics guidelines for international multicentre research involving people with intellectual disabilities

Dalton, A and McVilly, K 2004, 'Ethics guidelines for international multicentre research involving people with intellectual disabilities', Journal of Policy and Practice in Intellectual Disability, vol. 1, pp. 57-70.


Document type: Journal Article
Collection: Journal Articles

Title Ethics guidelines for international multicentre research involving people with intellectual disabilities
Author(s) Dalton, A
McVilly, K
Year 2004
Journal name Journal of Policy and Practice in Intellectual Disability
Volume number 1
Start page 57
End page 70
Total pages 13
Publisher Wiley-Blackwell
Abstract This position statement endorsed by the International Association for the Scientific Study of Intellectual Disabilities is designed to promote and facilitate research projects affecting and involving people with intellectual disabilities. The paucity of dedicated research infrastructure and expert ethical review processes to oversee research in this field, especially in developing countries, is asserted as a major issue to be addressed by both the scientific community and governments. International multicenter collaboration has been proposed as a means of addressing these problems. The statement draws on internationally recognized documents outlining the ethical considerations involved in human research activities. It interprets these documents in light of the particular needs and interests of people with intellectual disabilities and incorporates international consultation involving researchers from a variety of disciplines. It affirms the importance of ethical decision making in local communities. Specific recommendations are made concerning ethical review processes, research design considerations, consent processes and the conduct of research involving and affecting people with intellectual disabilities, their families and communities. Research proposals, especially those for international, multicenter projects, need to take into account cultural diversity among participants and differing legal requirements across jurisdictions, while at the same time maintaining the scientific rigor of the research protocol. Promoting partnerships between researchers and people with intellectual disability, together with their families, advocates and local communities are important considerations when developing research projects. Similarly, the development of strategies to both communicate findings to participants and their communities, and to promote their community's access to the benefits of these findings are all important ethical considerations.
Subject Psychological Methodology, Design and Analysis
DOI - identifier 10.1111/j.1741-1130.2004.04010.x
Copyright notice © 2004 International Association for the Scientific Study of Intellectual Disabilities and Blackwell Publishing, Inc.
ISSN 1741-1122
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