Is it worth it? Benefits in research with adults with intellectual disability

Project ETHICS Expert Panel

Research output: Contribution to journalArticlepeer-review

27 Scopus citations


Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.

Original languageEnglish (US)
Pages (from-to)440-453
Number of pages14
JournalIntellectual and Developmental Disabilities
Issue number6
StatePublished - 2016


  • Adults with intellectual disability
  • Research benefits
  • Research ethics

ASJC Scopus subject areas

  • General Medicine


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