Stakeholder Views on Intellectual Disability Research Ethics, New York, 2013 (ICPSR 38311)
Version Date: Mar 30, 2022 View help for published
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Katherine E. McDonald, Syracuse University
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https://doi.org/10.3886/ICPSR38311.v1
Version V1
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Adults with intellectual disabilities (ID) face significant physical and mental health disparities. Ethical challenges may discourage their inclusion in research and hinder scientific advancements to reduce these health disparities. Five core groups are adults with ID, individuals who provide informal support to adults with ID, individuals who provide services to adults with ID, ID researchers, and Institutional Review Board (IRB) members. Little is known about these stakeholders' opinions on how to ethically include adults with ID in research. Increasing this knowledge base, especially by inviting input from groups whose opinions are rarely examined, is critical to helping the scientific community devise and deploy sensitive and responsive practices and encouraging research to reduce pressing disparities.
The research's long-term goal is to encourage science that is sensitive to the ethical and social dimensions of research with adults with ID and more inclusive of this population. The research's aim was to qualitatively study the views of adults with ID, persons who provide informal support to adults with ID, and persons who provide services to adults with ID on the participation of adults with ID in self-report research. The focus on self-report research that aims to study the thoughts and experiences of adults with intellectual disability reflects the field's increased emphasis on direct representation in such research and the less clear risks this research may bear.
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This data collection may not be used for any purpose other than statistical reporting and analysis. Use of these data to learn the identity of any person or establishment is prohibited. To protect respondent privacy, this data collection is restricted from general dissemination. To obtain this file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.
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The research conducted focus groups with 57 adults from three different groups: adults with intellectual disability (n=24), people who provide social services to adults with intellectual disability (n=21), and family members and close friends of adults with intellectual disability (n=12). Adults with intellectual disability who did not have prior experience as an adult research participant were invited. Participants self-reported their disability and were from an array of circumstances including those with and without court-appointed guardians, those living independently in the community and in group homes, those with and without intimate partners, and those working and not working for pay, though most received SSI or SSDI.
Professionals who currently provide, or have in the past 12 months provided, social services to adults with intellectual disability, directly or through management roles (e.g., direct care providers, case managers, benefit coordinators, inclusion specialists, program directors, and executive directors), and family members and close friends of adults with intellectual disability who provided unpaid support to at least one adult with intellectual disability in the past 12 months were also invited. For all groups, all individuals were age 18 or older, had sufficient communication skills to make a decision and express their opinion (with or without accommodations), and who were in the greater Syracuse, NY (United States) area.
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Adults with intellectual disability, people who provide social services to adults with intellectual disability, and family members and close friends of adults with intellectual disability.
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Participants were asked questions about community members' general views, as well as their views on research benefits, harms and safeguards, trust and respect, and major aspects of research participation.
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