Authors' Note: The data for this manuscript were collected while the first author was at the University of Illinois at Chicago. Ali Kimmel contributed to this research while a volunteer at Portland State University. Funding for this research was provided by the University of Illinois at Chicago's Office of the Provost and by the Summer Research Institute sponsored by Portland State University's Department of Psychology and the College of Liberal Arts & Sciences Dean's Office. Funding for the first author to present an earlier version of this paper at the 13th World Congress of the International Association for the Scientific Study of Intellectual Disabilities was provided by the Stevens-Shapiro Fellowship. The opinions expressed herein are those of the authors and not of the funders. The authors express their appreciation to research participants.
Including Adults With Intellectual Disabilities in Research: Scientists' Perceptions of Risks and Protections
Article first published online: 8 DEC 2009
© 2009 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.
Journal of Policy and Practice in Intellectual Disabilities
Volume 6, Issue 4, pages 244–252, December 2009
How to Cite
McDonald, K. E., Kidney, C. A., Nelms, S. L., Parker, M. R., Kimmel, A. and Keys, C. B. (2009), Including Adults With Intellectual Disabilities in Research: Scientists' Perceptions of Risks and Protections. Journal of Policy and Practice in Intellectual Disabilities, 6: 244–252. doi: 10.1111/j.1741-1130.2009.00225.x
- Issue published online: 8 DEC 2009
- Article first published online: 8 DEC 2009
- Received October 3, 2008; accepted May 7, 2009
- human research ethics;
- intellectual disabilities;
- research participation
Social and cognitive characteristics of adults with intellectual disabilities (ID) place them at risk for inappropriate inclusion in or exclusion from research participation. As we grapple with how to include adults with ID in research in order to secure their right to contribute to scientific advancements and be positioned to derive benefit from ensuing knowledge, it is critical to consider scientific gatekeepers' perspectives on risks of and protections for including adults with ID in research. We surveyed 199 Institutional Review Board members and intellectual disability researchers in the United States to identify their perceptions of specific risks and necessary protections in (hypothetical) research studies. The research studies varied as to whether they included adults with ID in the research sample and the level of harm to which research participants were exposed. Results suggest that identification of psychological, social, and legal risks and necessary protections varied by the disability status of the sample, the level of risk, and the role of the person reviewing the study. For example, participants identified more psychological, information control, legal, and social risks in higher harm research studies. Participants reported a need for more protections in high-harm studies as well as studies that included adults with ID. In some instances the nature of identified risks and protections and respondents' characterization of these risks and necessary protections suggested concerns related specifically to adults with ID. Implications for practice, policy, and future research related to access to research participation are discussed.