"We want respect": adults with intellectual and developmental disabilities address respect in research.
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.
Public Health, Food Studies, and Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY 13244, USA. kemcdona@syr.edu
Katherine Elizabeth
KE
McDonald
D000328:Adult; D000368:Aged; D035843:Biomedical Research / Q000941:ethics / Q000592:standards; D002658:Developmental Disabilities / Q000523:psychology*; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology*; D007406:Interview, Psychological; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000523:psychology*; D011369:Professional-Patient Relations / Q000941:ethics*; D036301:Qualitative Research; D012107:Research Design / Q000592:standards*; D055815:Young Adult