Research ethics and intellectual disability: broadening the debates

• Published in: The Yale journal of biology & medicine Vol. 86; no. 3; pp. 303 - 314
• Main Author: Carlson, Licia
• Format: Journal Article
• Language: English
• Published: United States Yale Journal of Biology and Medicine 01.09.2013; YJBM
• Series: Focus: Research and Clinical Ethics
• Subjects: 20th century; Bioethics; Biomedical research; Clinical trials; Consent; Down syndrome; Ethics; Ethics, Research; Exploitation; Female; Focus: Research and Clinical Ethics; Hepatitis; Humans; Informed consent; Informed Consent - ethics; Intellectual disabilities; Intellectual Disability; Male; Medical research; Participation; People with disabilities; Quality of life; Research ethics; competence; informed consent; Down syndrome; research ethics; Disability Rights Movement; autism; intellectual disability
• ISSN: 0044-0086; 1551-4056

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.