Research ethics and intellectual disability: broadening the debates.
This article examines the ethical issues surrounding the inclusion of people with intellectual disabilities as research subjects. It explores subject selection, competence, risk and benefits, and authority through three tensions that emerge when considering these concepts in the context of the Disability Rights Movement and critical disability scholarship. These tensions are defined as the double dangers of inclusion and exclusion; the challenges of defining competence and risk in terms of individuals vs. groups; and the conflicts that arise when pursuing the dual goals of amelioration and elimination of disabilities. Though these tensions are not resolved, they underscore the importance of researchers engaging with critical disability perspectives in order to navigate these complex ethical questions.
Associate Professor of Philosophy, Providence College, Providence, Rhode Island.
Licia
L
Carlson
D032984:Ethics, Research; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D008607:Intellectual Disability; D008297:Male
Disability Rights Movement; Down syndrome; autism; competence; informed consent; intellectual disability; research ethics