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 - 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 - have noteworthy stakes in the research participation of adults with ID. 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. Our 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.
Our aims here are to: 1. 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-repor research (Study 1); 2. Create accessible, valid instruments of views toward key issues in the participation of adults with ID in self-report research (Study 2);and 3. Quantitatively study th views of adults with ID, persons who provide informal support to adults with ID, persons who provide services to adults with ID, ID researchers, and IRB members on research risks, research practices (including safeguards and incentives), benefits, and attitudes toward participation in self-report research (Study 3). The findings will have significant ethical and public health implications with the potential to encourage greater inclusion of people with ID in research that can lead to positive health outcomes. The project will generate a variety of research products including peer-reviewed articles, research briefs, and presentations. It will also shed light on paths forward in research, intervention development and testing, and policy. This research is highly innovative because no studies have used mixed methods to investigate multi-stakeholder perspectives on the ethical inclusion of adults with ID in research.

Public Health Relevance

Adults with intellectual disabilities face significant physical and mental health disparities. However, ethical and social challenges and barriers to safe and respectful involvement of adults with intellectual disabilities in research may discourage their inclusion therein and thus thwart the development of new knowledge to better understand and reduce these disparities. The study of stakeholders'views on ethical research practices will help the scientific community develop effective, sensitive ways to facilitate their participation in research, thereby promoting much needed scientific advancements and, in the long-term, future research that may help reduce health disparities experienced by adults with intellectual disabilities.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Exploratory/Developmental Grants (R21)
Project #
1R21HD075078-01
Application #
8430734
Study Section
Special Emphasis Panel (SEIR)
Program Officer
Kau, Alice S
Project Start
2013-03-01
Project End
2015-02-28
Budget Start
2013-03-01
Budget End
2014-02-28
Support Year
1
Fiscal Year
2013
Total Cost
$193,969
Indirect Cost
$62,909
Name
Syracuse University
Department
None
Type
Schools of Allied Health Profes
DUNS #
002257350
City
Syracuse
State
NY
Country
United States
Zip Code
13244