People with ID can provide their own consent to participate in low risk studies

By Willi Horner-Johnson, PhD
Institute on Development & Disability, Oregon Health & Science University, Portland, OR

People with intellectual disabilities (ID) are often excluded from research. One reason is that researchers may believe that people with ID are not able understand the study well enough to provide informed consent.

What did you do in your research?
We tested whether 131 individuals with ID (ages 18-65), residing in the community and receiving state services for people with ID, could accurately answer six questions about our study, including what the study is about, what they would be asked to do in the study, potential risks of the study, and their rights as study participants (study participation is voluntary and confidential and can be terminated at any point).

What did you find out?
More than half of study participants (57%; n=75) correctly answered all six questions assessing understanding of the study protocol. For those not able to answer one or more questions, identifying potential study risks was the most challenging question (perhaps because this was a low risk study).

What are the take-home messages?
Many people with ID likely can provide their own consent to participate in low risk studies.

To learn more about these findings contact Angela Weaver or visit Project Webiste.

Full Journal Article
Horner-Johnson, W., & Bailey, D. (2013). Assessing Understanding and Obtaining Consent From Adults With Intellectual Disabilities for a Health Promotion Study. Journal of Policy and Practice in Intellectual Disabilities, 10, 260–265.