Consent in Research and Treatment

By definition, individuals with intellectual and developmental disabilities (ID/DD) have cognitive, functional, and/or social impairments that affect their ability to make informed choices about both routine and significant decisions. Historical assumptions about impaired decisional capacity often meant that individuals with ID/DD played virtually no role in any life decisions, often leading to disadvantage, exploitation, and overprotection. Prevailing views gradually changed during the last half of the 20th century, as people with ID/DD, disability rights advocates, parents, and ethicists began calling for respect of autonomy and empowerment of individuals with ID/DD, invoking principles such as self-advocacy, self-determination, normalization, and opportunity.

[Page 301]Commensurate with these social movements has been the evolution of an ethical framework and set of legal requirements for researchers and health care professionals who work ...