TY - JOUR
T1 - A quantitative study of attitudes toward the research participation of adults with intellectual disability
T2 - Do stakeholders agree?
AU - Project ETHICS Expert Panel
AU - McDonald, Katherine E.
AU - Conroy, Nicole E.
AU - Olick, Robert S.
AU - Carroll, Anna
AU - Cuddy, Marty
AU - Feldman, Micah Fialka
AU - Flanigan, Daniel
AU - Fratangelo, Patricia
AU - Gonzalez, Lance
AU - Kennedy, Michael
AU - King, Kathleen
AU - Mansfield, Christopher
AU - McGowan, Deborah
AU - Romer, Rachel
AU - Turk, Margaret
AU - Velez, Shquria
AU - Walker, Pamela
AU - Worral, Priscilla
N1 - Funding Information:
We received support for this research from the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R21HD075078 (PI Katherine McDonald). The content is solely ours and does not necessarily represent the official views of the National Institutes of Health. For more about Project ETHICS, see http://bbi.syr.edu/projects/ETHICS/index.html .
Publisher Copyright:
© 2017 Elsevier Inc.
PY - 2018/7
Y1 - 2018/7
N2 - Background: Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. Objective/Hypothesis: We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. Methods: We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. Results: We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. Conclusions: Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights.
AB - Background: Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. Objective/Hypothesis: We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. Methods: We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. Results: We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. Conclusions: Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights.
KW - Attitudes
KW - Intellectual disability
KW - Research ethics
KW - Research participation
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U2 - 10.1016/j.dhjo.2017.12.004
DO - 10.1016/j.dhjo.2017.12.004
M3 - Article
C2 - 29292211
AN - SCOPUS:85039557562
SN - 1936-6574
VL - 11
SP - 345
EP - 350
JO - Disability and Health Journal
JF - Disability and Health Journal
IS - 3
ER -