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Ethics guidelines for international multi-centre research involving people with intellectual disabilities

Dalton, Arthur J. and McVilly, Keith 2004, Ethics guidelines for international multi-centre research involving people with intellectual disabilities, Journal of policy and practice in intellectual disability, vol. 1, no. 2, pp. 57-70, doi: 10.1111/j.1741-1130.2004.04010.x.

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Title Ethics guidelines for international multi-centre research involving people with intellectual disabilities
Author(s) Dalton, Arthur J.
McVilly, Keith
Journal name Journal of policy and practice in intellectual disability
Volume number 1
Issue number 2
Start page 57
End page 70
Publisher Wiley-Blackwell Publishing
Place of publication Malden, Mass.
Publication date 2004-06
ISSN 1741-1122
1741-1130
Keyword(s) research
ethics
intellectual disabilities
Summary 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.
Language eng
DOI 10.1111/j.1741-1130.2004.04010.x
Field of Research 170102 Developmental Psychology and Ageing
HERDC Research category C1.1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2004, International Association for the Scientific Study of Intellectual Disabilities and Blackwell Publishing
Persistent URL http://hdl.handle.net/10536/DRO/DU:30016849

Document type: Journal Article
Collection: School of Psychology
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