Research Ethics: Towards the Development of Professional Principles and Guidelines for Conducting Research among Individuals with Intellectual Developmental Disabilities (IDD)

Catalog # 890-182-2019| other authors : Tehila Raftar Ozery

This work was supported by a grant from Shalem Fund

The research findings indicate that including individuals with intellectual developmental disabilities (IDD) in research raises unique complex ethical dilemmas among different research groups. Disagreements and differences in approach were seen within and between the different research groups. The findings emphasize that developing adapted ethical working rules is important and significant for the purpose of including individuals with IDD in research. Moreover, it is necessary to develop training for researchers on assimilating the ethical principles uncovered in the research. To this aim, for instance, information and guidance sessions should be initiated for guardians and individuals with IDD. In addition, it is necessary to explore the possibility of changing existing procedures to include people with IDD in research and allow their involvement as co-researchers and thus pinpoint their needs and generate direct value. Exposing professionals and practitioners in the field, as well as operating and employing organizations in the free market, to the ethical dilemmas and to the importance of including individuals with IDD in research, will improve the quality of life of these individuals. The findings might help develop a document of ethical principles for the purpose of including individuals with IDD in research.

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Keywords: intellectual developmental disability, research ethics, ethical dilemmas, challenges, principles, guardians, decision supporters, ethics committees, employers in the free market, non-profit organizations, social workers, policymakers, linguistic simplification and accessibility, informed consent, exclusion.


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