PubMed

"We want respect": adults with intellectual and developmental disabilities address respect in research.

Authors

McDonald KE.

Journal

Am J Intellect Dev Disabil. 2012 Jul;117(4):263-74. doi: 10.1352/1944-7558-117.4.263.

Affiliation

Public Health, Food Studies, and Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY 13244, USA. kemcdona@syr.edu

Abstract

Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights' ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

PMID

22809073 [PubMed - indexed for MEDLINE]
Standard PubMed