Do people with intellectual disability require special human subjects research protections? The interplay of history, ethics, and policy

Chris Feudtner, Jeffrey P. Brosco

Research output: Contribution to journalArticle

3 Scopus citations

Abstract

People with intellectual disability (ID) have a long history of discrimination and stigmatization, and a more recent history of pride and self-advocacy. The early history suggests that people with ID are a vulnerable population and deserve special research protections as do some other groups; the disability rights movement of the late 20th century aligns people with ID more closely with the principle of autonomy that has guided clinical and research ethics for the last 40 years. In examining the history of people with ID and the prevailing framework of human subjects research protections in the United States, we conclude that people with ID do not require special protection in human subjects research. The protections that have already been put in place for all individuals, if conscientiously and effectively implemented, achieve the right balance between safeguarding the interest of human research subjects and empowering individuals who choose to do so to participate in research.

Original languageEnglish (US)
Pages (from-to)52-56
Number of pages5
JournalDevelopmental Disabilities Research Reviews
Volume17
Issue number1
DOIs
StatePublished - Dec 1 2011
Externally publishedYes

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Keywords

  • Human subjects research
  • Intellectual disability
  • Medical ethics
  • Research ethics
  • Vulnerable populations

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Psychiatry and Mental health
  • Developmental and Educational Psychology

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