title: "You can't be cold and scientific": community views on ethical issues in intellectual disability research.
abstract: Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety.
authors.affiliation: Syracuse University, NY, USA kemcdona@syr.edu.
authors.forename: Katherine E
authors.initials: KE
authors.lastname: McDonald
authors.affiliation: Syracuse University, NY, USA.
authors.forename: Nicole M
authors.initials: NM
authors.lastname: Schwartz
authors.affiliation: Syracuse University, NY, USA.
authors.forename: Colleen M
authors.initials: CM
authors.lastname: Gibbons
authors.affiliation: SUNY Upstate Medical University, Syracuse, USA.
authors.forename: Robert S
authors.initials: RS
authors.lastname: Olick
mesh_terms: D000328:Adult; D000368:Aged; D001290:Attitude; D006233:Persons with Disabilities; D032984:Ethics, Research; D005260:Female; D006801:Humans; D008607:Intellectual Disability; D008297:Male; D008875:Middle Aged; D057766:Policy; D036301:Qualitative Research; D012106:Research; D035842:Research Subjects; D012111:Residence Characteristics; D055815:Young Adult
keywords: disability rights; intellectual disability; research ethics