title: Is It Worth It? Benefits in Research With Adults With Intellectual Disability.
abstract: 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.
authors.affiliation: Katherine E. McDonald and Nicole E. Conroy, Syracuse University; Robert S. Olick, SUNY Upstate Medical University; and the Project ETHICS Expert Panel, which includes Anna Carroll, Marty Cuddy, Micah Fialka-Feldman, Dan Flanigan, Pat Fratangelo, Lance Gonzalez, Michael Kennedy, Kathleen King, Chris Mansfield, Deb McGowan, Rachel Romer, Margaret Turk, Shquria Velez, Pamela Walker, and Priscilla Worral.
authors.forename: Katherine E
authors.initials: KE
authors.lastname: McDonald
authors.affiliation: Katherine E. McDonald and Nicole E. Conroy, Syracuse University; Robert S. Olick, SUNY Upstate Medical University; and the Project ETHICS Expert Panel, which includes Anna Carroll, Marty Cuddy, Micah Fialka-Feldman, Dan Flanigan, Pat Fratangelo, Lance Gonzalez, Michael Kennedy, Kathleen King, Chris Mansfield, Deb McGowan, Rachel Romer, Margaret Turk, Shquria Velez, Pamela Walker, and Priscilla Worral.
authors.forename: Nicole E
authors.initials: NE
authors.lastname: Conroy
authors.affiliation: Katherine E. McDonald and Nicole E. Conroy, Syracuse University; Robert S. Olick, SUNY Upstate Medical University; and the Project ETHICS Expert Panel, which includes Anna Carroll, Marty Cuddy, Micah Fialka-Feldman, Dan Flanigan, Pat Fratangelo, Lance Gonzalez, Michael Kennedy, Kathleen King, Chris Mansfield, Deb McGowan, Rachel Romer, Margaret Turk, Shquria Velez, Pamela Walker, and Priscilla Worral.
authors.forename: Robert S
authors.initials: RS
authors.lastname: Olick
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D055812:Community-Based Participatory Research; D005260:Female; D000069576:Health Equity; D006293:Health Promotion; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D011788:Quality of Life
keywords: adults with intellectual disability; research benefits; research ethics