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ERIC Number: EJ1122201
Record Type: Journal
Publication Date: 2016-Dec
Pages: 14
Abstractor: As Provided
ISSN: ISSN-1934-9491
Is It Worth It? Benefits in Research with Adults with Intellectual Disability
McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.
Intellectual and Developmental Disabilities, v54 n6 p440-453 Dec 2016
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. [This article was written with "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.]
American Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail:; Web site:
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (NIH)
Authoring Institution: N/A
Grant or Contract Numbers: R21HD075078