Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intel...

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Published inJournal of empirical research on human research ethics Vol. 11; no. 5; pp. 424 - 438
Main Authors McDonald, Katherine E., Conroy, Nicole E., Kim, Carolyn I., LoBraico, Emily J., Prather, Ellis M., Olick, Robert S.
Format Journal Article
LanguageEnglish
Published Los Angeles, CA Sage Publications, Ltd 01.12.2016
SAGE Publications
Sage Publications Ltd
Subjects
Adult
Adults
Attitude
Decision Making
Disabled Persons
Ethical Issues In Research With Vulnerable Groups
Ethics Committees, Research
Ethics, Research
Family
Female
Human subjects
Humans
Informed Consent
Intellectual disabilities
Intellectual Disability
Male
Middle Aged
Parent attitudes
Patient Advocacy
Patient Selection
Public Opinion
Research ethics
Research Personnel
Research Subjects
Researchers
Residence Characteristics
Review boards
Safety
Surveys and Questionnaires
Well being
safeguards
disability rights
research ethics
intellectual disability
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Summary:Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.
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Members of the Project ETHICS Expert Panel include Anna Carroll, Marty Cuddy, Micah Fialka-Feldman, Daniel Flanigan, Patricia Fratangelo, Lance Gonzalez, Michael Kennedy, Kathleen King, Christopher Mansfield, Deborah McGowan, Rachel Romer, Margaret Turk, Shquria Velez, Pamela Walker, and Priscilla Worral.
ISSN:1556-2646
1556-2654
DOI:10.1177/1556264616651182