The human rights context for ethical requirements for involving people with intellectual disability in medical research

• Published in: Journal of intellectual disability research 2012-11, Vol.56 (11), p.1122-1132
• Main Authors: Iacono, T., Carling-Jenkins, R.
• Format: Article
• Language: English
• Subjects: Australia; Biomedical Research - ethics; Biomedical Research - history; Civil Rights; Disabled people; Disabled Persons - history; Ethics; Ethics, Medical - history; Foreign Countries; Guidelines; Guidelines as Topic; Helsinki Declaration - history; History, 20th Century; History, 21st Century; Human Experimentation - ethics; Human Experimentation - history; Human rights; Human Rights - history; Informed consent; Informed Consent - history; intellectual disability; Intellectual Disability - history; Jurisdiction; Learning disabilities; Learning disabled people; Medical Research; Mental Retardation; National Socialism - history; Patients; Researchers; United Nations - history; Violations
• ISSN: 0964-2633; 1365-2788
• DOI: 10.1111/j.1365-2788.2012.01617.x

Background The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and differences between medical and other research within a single jurisdiction. Method The history of the Helsinki Declaration and informed consent within medical research, and high‐profile examples of ethical misconduct involving people with ID and other groups are reviewed. The UN Convention on the Rights of Persons with Disabilities is then examined for its research implications. This background is used to examine a current anomaly within an Australian context for the inclusion of people with ID without decisional capacity in medical versus other types of research. Results Ethical guidelines have often failed to protect the human rights of people with ID and other vulnerable groups. Contrasting requirements within an Australian jurisdiction for medical and other research would seem to have originated in early deference to medical authority for making decisions on behalf of patients. Conclusions Stringent ethical requirements are likely to continue to challenge researchers in ID. A human rights perspective provides a framework for engaging both researchers and vulnerable participant groups.