There are several cases through out history of the exploitation of individuals with intellectual disability being exploited in clinical research. Examples like the Willowbrook State School for Children with Mental Retardation and the Jewish Chronic Disease Hospital show how important ethical precautions are to consider when working with this population.

Exploitation of Individuals with Intellectual Disability in Research

Systematic exclusion of individuals with severe intellectual disability from research contributes to health inequalities. It also places them at as disadvantage by preventing them from receiving the potential benefits that may result from research. Many parents and caregivers have advocated for research on behalf of their children.

Exclusion of Individuals with Severe Intellectual Disability from Research

Alternative research methods may need to be used because children and adolescents are unable to give their assent and may have an indistinguishable dissent.

Consent of Children with Severe Intellectual Disability

Children with Intellectual Disability are less likely than typically developing children to be included in clinical research, even though they are more likely to have painful comorbidities and medical interventions.

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Individuals with intellectual disabilities can serve as active members of research teams in both qualitative and quantitative studies, participating in the research process rather than merely serving as subjects.

Research Involvement of Individuals with Intellectual Disabilities

Raskoff, S. Z., Thurm, A., Miguel, H. O., Kim, S. Y. H., & Quezado, Z. M. N. (2023). Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives. The Lancet. Child & adolescent health, 7(4), 288–296. https://doi.org/10.1016/S2352-4642(22)00346-7

Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives

Bigby, C., Frawley, P., & Ramcharan, P. (2014). Conceptualizing Inclusive Research with People with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3–12. https://doi.org/10.1111/jar.12083 

Conceptualizing Inclusive Research with People with Intellectual Disability


“Walmsley (2001) coined the term ‘inclusive research’ to denote research involving people with intellectual disability as ‘more than just subjects or respondents’’

Other words to describe it include participatory, collaborative, and co-researching, action, and emancipatory. The words are not necessarily true, accurate, or applicable as participation of individuals with ID has not been exclusively restricted to qualitative research.

Inclusive Research

Fair participation selection protects vulnerable populations. The persons recruited for research should be selected based on the aims of the study and not vulnerability, privilege, or other unrelated factors. Those with severe intellectual and developmental disabilities should only be involved in research if relevant data cannot be collected without them.

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