We want respect: Adults with intellectual and developmental disabilities address respect in research

Research output: Contribution to journalArticle

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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.

Original languageEnglish (US)
Pages (from-to)263-274
Number of pages12
JournalAmerican Journal on Intellectual and Developmental Disabilities
Volume117
Issue number4
DOIs
StatePublished - Jul 2012

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Keywords

  • Inclusion
  • People with intellectual and developmental disabilities
  • Research participation
  • Respect

ASJC Scopus subject areas

  • Clinical Neurology
  • Pediatrics, Perinatology, and Child Health
  • Psychiatry and Mental health
  • Developmental and Educational Psychology
  • Neuropsychology and Physiological Psychology
  • Arts and Humanities (miscellaneous)

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