Assessing Understanding and Obtaining Consent From Adults With Intellectual Disabilities for a Health Promotion Study

Abstract

People with intellectual disabilities are often excluded from research, in part because they may be perceived as lacking capacity to provide informed consent. A requirement of informed decision making about research participation is ability to understand the study description and disclosures presented during the consent process. The authors' aims were to determine the extent to which study participants with intellectual disabilities were able to answer questions about key aspects of study disclosures, identify ways in which people who provided appropriate answers for all of the questions differed from those who had difficulty with one or more of the questions, and examine patterns of responses to see if certain issues were more difficult to understand than others. The authors piloted a short set of questions to assess the extent to which adults with intellectual disabilities were able to answer questions about key aspects of a health promotion study. More than half of study participants correctly answered all of the questions. For those not able to answer all questions, identifying potential risks of being in the study proved the most challenging. The findings indicate that many people with intellectual disabilities likely can provide their own consent to participate in low risk studies.