Inclusion of Adults with Intellectual and Developmental Disabilities in Low-Risk Research: Consent and Accommodations

The ethical inclusion of adults with intellectual and developmental disabilities (IDD) in research entails practices that will enhance their autonomy without exposing them to undue risk. Although inclusive research involving people with IDD responds to many shortcomings of more traditional research approaches, this chapter focuses instead on how best to conduct traditional research. The author focuses on the process of informed consent and argues for the importance of accommodations to support adults with IDD. The topics discussed include: the development of research ethics in response to the exploitation of vulnerable populations; the ethical tensions associated with research involving people with IDD (including the concept of vulnerability, decision-making capacity, and informed consent); the ethical argument for providing accommodations; and well-informed strategies for accommodating adults with IDD throughout the research consent process. The purpose of the chapter is to convince researchers who use traditional research paradigms of the ethical imperative to provide accommodations that reduce the context-specific vulnerability of adults with IDD during the consent process.